Pawsome Pet Therapy

April 2024

Team Louie

When friends and family of a patient who had passed away gathered at Tallahassee Memorial HealthCare to say their goodbyes, 7-year-old Golden Doodle Louie knew exactly what to do to comfort them.

“My big 95-pound dog got in bed with the little boy and put his chin on him; it was so touching,” said Rhonda Tullos, a volunteer at Tallahassee Memorial Animal Therapy and Louie’s handler.

Walls came down. The mood in the room felt instantly lighter. The patient’s mother somehow managed a smile, and his younger brother, too young to understand, hugged Louie.

“We talked to the little boy, talked with mom and gave her a moment to see Louie loving on her son,” Rhonda said.  “Just to be able to give her this one last little happy thing.”

The next day, Team Louie took part in the patient’s Honor Walk, a sacred tradition where family, friends and hospital staff line the hallways to show respect for patients who are donating organs to others as they make their final journey from their ICU room.

“It was the sweetest thing I think I’ve ever seen,” Rhonda said. “What got me the most was seeing the first-responders. I love our community. We’re small enough that we still care about each other and take care of each other.”

Serving patients and their families through physical and emotional challenges, rehabilitation and loss is what Tallahassee Memorial Animal Therapy is all about. Trained volunteers and their pets help reduce anxiety and bring relief to people of all ages. Patients are able to interact safely with the dogs and receive their unconditional love, making their hospital stay less stressful and, in some cases, more like home.

“A lot of patients are missing their dogs,” Rhonda said. “They see Louie and knowing I’m a dog lover, they show me pictures of their dog.”

TMH Animal Therapy and Survival Flight

While a growing number of hospitals across the country offer animal therapy, Tallahassee Memorial Animal Therapy is the only program of its kind in the Big Bend region. It has been nurturing the healing bond between people and animals since 2005. All told, about 200 teams visit more than 70 community facilities a year.

Cats, bunnies, birds, horses and other pets are also available to offer therapy, though not all of the animals are permitted to make hospital visits. Matches are made based on the situation, location, an animal’s temperament, and other factors. Some of the animals are rescues from local shelters.

In addition to medical rehabilitation, animal therapy teams visit with seniors to offer them a break from depression and loneliness, and they assist victims of violent crimes with telling their story accurately in court. They also work with reluctant readers in various schools in Leon and Wakulla counties. Students in the program enjoy weekly sessions practicing reading aloud to a handler-animal team. R.E.A.D.® (Reading Education Assistance Dogs) is an international program that improves self-confidence, as well as reading and speaking skills.

“I had one teacher tell me one little boy will now raise his hand and read out loud in class,” Rhonda said.

TMH Animal Therapy Teams

Something remarkable happens when an animal enters the room. Whether helping a child learn to read or helping a mother say goodbye to her young son, the animals and their handlers have an impact far beyond hospital walls.

Stephanie Perkins, director of Tallahassee Memorial Animal Therapy said the animal creates a distraction, first and foremost.

“There’s a different feeling in the room,” Stephanie said. “It’s backed by hard science.”

The health benefits of dogs and cats are well-documented. Petting a canine companion can help lower blood pressure and ease depression. And pets help decrease stress by lowering levels of the stress hormone cortisol, and increasing levels of the neurochemical oxytocin, the love hormone.

“Having an animal there is really helpful in a lot of cases because they are non-judgmental creatures,” Stephanie said.  “The animal doesn’t care if you’re bawling, or if you haven’t had a shower in five days.”

Animal therapy teams significantly impact the lives of those who are most vulnerable. They have the potential to motivate patients and set them on a path to healing.

“The patient will make that little extra effort to pet the dog or reach way over here to give the dog a treat,” Rhonda said.

TMH Animal Therapy Leadership

Louie was a puppy when Rhonda first heard about Tallahassee Memorial Animal Therapy. Dogs with the right temperament can be trained as a therapy animal after their first birthday. Louie entered the program in 2020 at the age of 3 and has become a rock star in the halls of Tallahassee Memorial HealthCare and on social media. Louie has his own Facebook and Instagram pages, as well as business cards and a custom sticker with his mug on it.

“You should see him,” Rhonda said. “He loves the attention. The minute we walk into the hospital parking garage, he starts prancing. A crowd of kids makes him so happy.

“We know how happy our dogs make us. We just want to share that with other people.”

If you are interested in learning more about how to become a trained animal therapy volunteer, visit TMH.org. New recruits are considered twice a year. Teams attend a 10-week course, and therapy dogs must pass a nationally recognized basic skills and therapy skills evaluation. Only about 20% pass on the first try. Some of the animals were rescued from local shelters.

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April is National Donate Life Month, and LifeQuest is joining forces with Leon County Animal Services to help save lives. Each week, we will feature an adorable adoptable Pawsome Pet dressed in blue and green on social media. Browse the Pawsome Pets album on LifeQuest’s Facebook page or scan the QR code below to find a furry friend. For more information, contact Alexis Poulsen at Leon County Animal Services at 850-891-2970 or 850-491-4747.

 

 

Deck the Trees

January 2024

Every December in Green Cove Springs, Fla., community members light up Spring Park with the Parade of Trees. This event started in 2004 where a few Christmas trees were decorated and placed in the park. This year, there were 224 Christmas trees illuminating the park. Each tree is decorated by families, organizations, or local businesses, and many trees are dedicated to deceased loved ones. This free wonderland brings over 10,000 people annually to walk around the park and see the glow of the holiday spirit.

For the first time, LifeQuest partnered with Legacy Donor Services Foundation to decorate a tree. The Donate Life: Your Gift, Their Life Tree sparkled with hope, love and remembrance. Transplant recipients and donor family members came out and decorated the tree with LifeQuest and Legacy. Images of transplant survivors hung around the tree honoring their donor and their new gift. Donor families also placed images of their loved ones and mementos on the tree. Ornaments sharing facts about organ donation hung on the tree with hopes visitors could learn about the power of organ donation. The Donate Life blue and green colors were illuminated with different ornaments and green bracelets hung for people to take.

Hundreds of people passed by the tree throughout the season and saw the tributes to those who gave the Gift of Life, received a lifesaving gift, and read facts about donation. ‘Tis the season to educate the community about donation!

 

Ties that Bind

January 2024

Imagine squeezing a lifetime of living into an 8 by 8-inch quilt square. Now imagine doing it for the families of organ donors while working on deadline.

“You feel a sense of responsibility,” said Laura Snook, a member of the Ocean Waves Quilters Guild in Ponte Vedra Beach, Fla.

Members of the Ocean Waves Quilters Guild.

In a collaboration of love, the Guild breathed life into one of LifeQuest’s most treasured projects, the Strom Bryson Memorial Donor Quilt, named for a young organ donor from Tallahassee.

Days before the 2023 Tribute to Life, Guild members donated their time and resources toward putting finishing touches on the memorial quilt in time to unveil it at the annual ceremony honoring organ donors.

LifeQuest Family Services Coordinator Pamela Rittenhouse set things in motion when she stopped by a monthly meeting of the Guild to ask if the group’s members would be willing to lend a hand.

“The Guild felt an immediate connection,” said Jan Coursey, president of the Ocean Waves Quilters Guild. “We wanted to do whatever we could to help.”

Jan gave the nod for the collaboration, and the group’s members offered their support. Laura was primarily responsible for sewing the Strom Bryson Memorial Donor Quilt which is dedicated to preserving the memories of those who have given the Gift of Life.

Laura Snook working from home.

All told, Laura devoted more than 40 hours over a 12-day period to the project. Working with cherished items shared by donor families, she crafted the quilt squares of four organ donors and pieced together a collection of remembrances from donor families throughout northern Florida.

“Everyone has different talents, and everyone has a different amount of time they can devote to projects,” Jan said. “Everything she [Laura] makes is done meticulously.  Her colors are beautiful and brilliantly matched. She volunteered to make one of the blocks and eventually assembled the quilt when the need arose.”

LifeQuest continuously collects handmade squares from donor families to create more donor memorial quilt panels. There are currently 12 panels. Once 20 squares are crafted, they are sewn together into a quilt and displayed at special events, and when not in use, the quilts are displayed in LifeQuest offices throughout northern Florida.

The Strom Bryson Memorial Quilt project was launched in 1998 as a collaboration between LifeQuest, a local tissue bank, eye bank, and Martha Bryson, the mother of the quilt’s namesake, Strom Bryson. Martha chose the quilt project to honor her son, who as a toddler carried a full-sized quilt around the house instead of a baby blanket, and to allow other families to honor their loved ones. When Strom passed in 1995, he gave the Gift of Life to four individuals awaiting organ transplants. When Martha passed in 2009, she also gave the Gift of Life.  They are memorialized together on the tenth panel of the quilt.

Each quilt embodies the personality of the donors through the pieces of fabric and clothing sewn into the quilt. Each memory square is as unique as the donor hero being represented.

Laura wanted to learn as much as she could about each donor as she crafted several squares and pieced together all 20. She watched videos about their lives from the LifeQuest YouTube channel.

“I was really moved by the entire process of it,” Laura said. “I can’t imagine these families and how they go about doing it, especially when they’re so young. The hardest ones were the two children. It resonates. It’s just difficult. I don’t know how the families do it.”

Some quilt squares have pictures, others sayings.  Some are pieces of fabric with no name at all. Individually, they embody the set of characteristics that make each person who they are. Overall, they represent the lives of donor heroes woven together by the thread of donation.

A patchwork dinosaur. A favorite photo. The words “Ginger Boy.” Each represents the brief life of David Figueroa, 3 months. He saved two lives.

Early rendition of the quilt postcard.

“Even in death I gave life,” is the powerful message stitched into the quilt square of Omari Jackson, 18. He saved six lives.

Mason Sturms, 4, loved Marvel Comics and superheroes before he became one. Mason saved three lives.

A Star of David. Lady bugs. Atlanta Braves baseball. All were meant to reflect Aimee Sachs’, 38, zest for living. She saved three lives.

“The pictures made it a little more special to the family,” said Laura, whose mother introduced her to quilting. “I never sewed a stitch until I was in my forties.”

Quilting adds challenge and creativity to Laura’s life, but it is the camaraderie of her quilting community she cannot live without.

“People who quilt are very open, very giving, very willing to share their knowledge,” Laura said.

The Guild works with a long list of charities to provide comfort and care to those in need of healing or a hug.  They make everything from heart pillows for Hospice patients to treat bags for the Ronald McDonald House.

“They use their talents to help other people,” Pamela said.

The Ocean Waves Quilters Guild meets monthly in the cultural center at Christ Church  in Ponte Vedra Beach.

The Guild takes on projects to help others heal and move on after a difficult loss. They also provide comfort and security through personalized handmade quilts, pillows and bags.

“The ladies of Ocean Wave Quilters Guild love to sew,” Jan said. “I personally do a lot of sewing, hemming, alterations for my family, but making things to give to bless someone we have never met and probably never will is something that just makes all of the sewers feel good.”

(By Kim Gilmore, Senior Public Education Coordinator)

Beach Happy

October 2023

Glenn Carless wants to recover near the Gulf of Mexico.

“To be on the beach and enjoy our warm Gulf waters, that’s my dream now,” said Glenn, 57. “I can’t think of a better way to spend my days than out on the beach and getting therapy from the calm Gulf waters. That, and I wanted to see my daughter, Sierra, graduate from college.”

Until recently, Glenn wouldn’t have dared dream about his future or make plans with Michelle, his wife of 32 years, and their children, Sierra, 28, and Alex, 23. He was too busy trying to survive long enough to get a liver transplant.

Michelle and Glenn with LQ Ambassador Paula Fredricks.

“That’s how sick I was,” he said.

A serious bout of food poisoning in his twenties and years of social drinking took a toll on Glenn’s health, leading doctors to diagnose him with cirrhosis and eventually liver failure. At one point, he gave up on getting well. That he survived at all is a wonder, and his message to others is enjoy life and be mindful of what we do to our bodies.

Glenn spent a great deal of his twenties and thirties hanging out in coastal towns along Virginia’s East Coast. He and his family enjoyed a carefree lifestyle for many years, including riding jet skis in the Atlantic Ocean in Southeast Virginia.

During that time, Michelle worked as a nurse. Glenn ran the family business. They labored and played until their kids went off to college.

“We moved to Florida from Virginia in September 2019 after Hurricane Michael, with hopes of helping to rebuild the community,” said Michelle, who currently works in the cardiac catheterization laboratory at Ascension Sacred Heart Bay.

In 2020, Glenn started a small, hotshot trucking company. COVID hit, and he felt an obligation to put in even more hours as an essential service provider.

The daily grind resulted in chronic fatigue. It became difficult for him to rebound from overnight runs and sleeping in hotels and the cab of his truck. Eventually, it got to the point where he needed a week’s rest to recover from a single road trip.

Glenn scheduled an appointment with his doctor that was required to renew his commercial driver license or CDL. He was surprised when the doctor told him he was too sick to drive and reluctantly granted a six-month extension of his license.

During one office visit, Glenn’s doctor delivered this sobering message.

“The doctor said quit drinking or die,” Glenn recalled.

Unbeknownst to his doctor and with his family’s support, Glenn had already quit drinking cold turkey.

“I hadn’t had a drop in a long time,” Glenn said. “I quit long before the doctor told me to.”

In October of 2021, just two days after his commercial driver license had expired, Glenn drove Michelle to work at the hospital and got into a car accident on the way home. He fractured seven vertebrae and required six months of rehabilitation.

Glenn rebounded just in time. In May of 2022, he was referred to the Mayo Clinic in Jacksonville to determine if he was a suitable candidate for a liver transplant.

“We went to Mayo four times and completed more testing each time,” said Glenn. “We would go before the board to decide if I was a candidate for transplant, and each time they would come back and say they needed more information.

“During this time, I was so sick I gave up. I mustered enough energy to get our house in order so my family could continue on without me.”

Glenn’s life was about to improve dramatically.

On Nov. 10, 2022, he was placed on the national transplant waiting list. He received a lifesaving liver donation six days later. Glenn was surprised the call came so soon after months of trying to get on the waiting list.

Glenn and Michelle made it from their home in Panama City Beach to the Mayo Clinic Transplant Center in Jacksonville in record time.

“My Camaro goes fast, and Michelle knows how to drive it,” Glenn quipped.

Glenn sharing his story with others.

Today Glenn is a proud teetotaler who is grateful for a second chance.

The Florida transplant and self-described beach bum could hardly wait to give back and get back to living life to the fullest. For starters, Glenn shared his donation story with doctors and nurses at a flag-raising ceremony at Ascension Sacred Heart Bay to celebrate National Donate Life Month in April.

In addition to training as a volunteer for LifeQuest, Glenn has his sight set on a new pastime that will allow him to enjoy his passion for being near the water.

Eight months post-transplant, Glenn has had time to reflect on what happened to him and what matters most. In 1988, he was hospitalized for a week with hepatitis that developed after eating contaminated fast food. He believes it may have contributed to his liver failure.

Not that it really matters.

“Now, I may be as broke as I’ve ever been, but I’m as happy as I’ve ever been,” he said. “I’ve been given a second chance.”

“I’m just glad he made it, and we are on the other side,” Michelle said.

Thanks to Glenn’s Gift of Life, he and Michelle were able to travel to Indiana in May to see their daughter, Sierra, graduate from Purdue University with a Doctor of Veterinary Medicine (DMV).

“We say that out loud a lot,” Glenn beamed. “I’m proud of that.”

The Heart of a Tax Collector

September 2023:

Sara Burgess of St. John’s County knew about arrhythmogenic right ventricular dysplasia (ARVD) from a young age. ARVD is a rare form of cardiomyopathy that occurs when the heart muscle of the right ventricle is replaced by fat and/or fibrous tissue. Sara’s father, grandmother and three uncles all passed away before the age of 40 because of ARVD. Since ARVD is a hereditary gene, her mother started getting Sara tested when she was a child. It wasn’t until 2013, at the age of 33, the same age her father was when died of ARVD, that Sara received her first abnormal heart evaluation indicating an increase in ARVD symptoms.  Sara was officially diagnosed with ARVD, and the next day, the doctors at Flager Health+ in St. Augustine placed a defibrillator in her chest. They recommended that Sara have tests done at John Hopkins Hospital since they were researching ARVD.

Sara with Mayo Clinic heart transplant surgeon.

After the placement of the defibrillator, Sara had no signs or symptoms of ARVD for almost 10 years, but in December 2022 Sara started experiencing ventricular tachycardia (VT) which is a rapid, abnormal heart rhythm or arrhythmia. Prolonged VT, even just for more than a few seconds at a time, is dangerous and can become life-threatening. Sara went to back to Flagler Health+ for a heart catheterization, and her doctor immediately saw the blockage in her heart. Her doctor told her that in the next 10-15 years she would need a heart transplant. Five days later Sara had multiple blood clots and was referred to Mayo Clinic Hospital in Jacksonville.

By February 2023 Sara’s heart failure was having a negative impact on her kidneys. She was experiencing VT episodes regularly and was admitted to the Mayo Clinic for a week, where she was told she would need a transplant. After completing the transplant evaluations on April 8, Sara was placed on the transplant waiting list as a status 4. Sara was able to still go to work at the St. Johns County Tax Collector’s office, until June 20, when she was admitted again to the Mayo Clinic. Due to Sara’s VT episodes the Mayo Clinic wanted her to stay in the hospital until she received her heart, which they anticipated would take two to four months. Five days later Sara received a call that a heart was available to her, but wasn’t meant to be; it was what they call a dry run. Three days later Sara got a second call saying that another heart was available, and this one was it. On June 30, 2023, Sara woke up with a new heart.

“I was in shock,” said Sara. “They told me I would be waiting in the hospital for months, and it took 10 days!”

Sara waiting for a heart at the Mayo Clinic with her husband and son.

Since receiving her new heart, Sara is grateful for this second chance at life.

“I should be given a new birth certificate,” Sara said, explaining how this new heart makes her feel like a new person. “I couldn’t walk to the mailbox without stopping to breathe.”

Now Sara is able to go on long bike rides with her husband and play with her son. She is so thankful for her donor and donor family and plans to write a letter to them this fall verbalizing her gratitude to them.

Sara also looks forward to taking this experience back to work where she regularly registers new drivers on Florida’s organ and tissue donor registry. With her new outlook on life, Sara now has a first-hand experience to share with new drivers when they have questions about organ donation.

“I am very protective of Donate Life, because one, yes, really did save my life.”

Faces of Life

September 2023:

Steve Binder could not have imagined the unbelievable twists and turns that led him to discover his true calling and arrive at the place of joy he feels today.

At 7 months old, he was diagnosed with polycystic kidney disease. Since then, he’s endured one medical crisis after another. A stroke, an aneurism, cancer and liver and kidney failure are just a few of the setbacks he’s had to overcome.

Steve editing 2022 Faces of Life.

“Donation has three times given me the Gift of Life,” said Steve, who’s had a liver and three lifesaving kidney transplants. “It’s also given me a calling, a purpose that would be missing in my life without it.”

Since 2008, Steve has edited the Faces of Life video featured at LifeQuest’s Tribute to Life honoring organ, eye and tissue donors.  The award-winning producer said it’s a project that’s dear to his heart.

“I thank LifeQuest for asking me to work with them on this very special video,” he said. “I am honored that I’m given the opportunity to give back to donor families in a way that I am able.”

On Friday, Oct. 20, 2023, LifeQuest will host the 22nd Annual Tribute the Life at 7 p.m. EST at Christ Episcopal Church, 400 San Juan Drive in Ponte Vedra Beach, Fla. Guests may attend the event in person or virtually through our live stream on YouTube.

Tribute to Life started as a small gathering in 2001. It earned a 2002 Judges’ Award from the Jacksonville Chapter of the Florida Public Relations Association in the Public Relations Programs category for Special Events for what was then called the National Donor Sabbath Candlelight Ceremony.

Steve in the production studio in 1989.

This year’s event offers inspiring presentations by LifeQuest donor families and grateful recipients. It will include live interviews and a musical performance. There will be a candle lighting and new videos not seen before.

Faces of Life will close out the ceremony. The simple, solemn nature of the video is powerful. There are no words, just music. The faces say everything that needs to be said.

“I have the deepest dedication to the donor families that provide their loved one’s photo for the video,” Steve said.  “I admire and honor their courage, and I hope that my respect and gratitude show in the video.”

Steve said he feels a sense of responsibility and closeness to each donor featured in the video.  Without the gift of donation, he just as easily could have been among them.

Donor Hunter Henry gifted Steve with a kidney.

Steve had his life mapped out when he graduated college and left his home state of Iowa in 1985 to pursue a broadcast production career in Florida. Before long, the only thing he had control of was his positive attitude. For that, he credits growing up in a loving family and his wife, Kristin. She served as his caregiver long before they married in 2015. Shortly after they met, Kristin offered to drive Steve to his dialysis treatments, and the rest is history.

“It’s true, we fell in love at dialysis,” Steve said. “She would come early to pick me up, and we’d sit and chat and laugh while I finished my last hour of treatment.  She often says she’s the world’s worst caregiver. I can assure you, she is not.”

Steve wrote and directed commercials for HBO, ESPN, Disney World and Daytona International Speedway. He produced television commercials for Comcast in Sarasota before moving to his current hometown of Jacksonville. He started his own video production company in 2007 after losing his job at Comcast due to illness. In 2011, a stroke left him unable to carry heavy camera equipment, walk unassisted or use his left hand. He is also blind in his right eye due to shingles.

Steve with the family of one of his donors.

Refusing to let his limited mobility get in the way, Steve shifted his focus to designing light-hearted graphic designs meant to start donation conversations. Today, he and Kristin own KNS Transplant Gear selling donation apparel on Amazon and Zazzle.

“The humorous designs get attention and make it easier for recipients to tell their transplant stories to friends, family and strangers,” Steve said.

Prior to becoming disabled, Steve won four medals competing in the U.S. Transplant Games, now called the Transplant Games of America. He’s been a member and served in leadership roles for donation committees and foundations. He works with support groups and advocates for donation. He was awarded the NKF Volunteer Award in 2000, and the Patient Service Award in 2005.

Both personally and professionally, organ donation has become Steve’s life.

“It’s given me the opportunity to meet some truly inspiring people and become lifelong friends with many who share the transplant experience,” he said.

By Kim Gilmore, LifeQuest Sr. Public Education Coordinator

Celebrating the Gift of Life.

Kristin and Steve at Katie Ride for Life.

World Transplant Games, Australia.

Aimee’s Greatest Play

August 2023

Small but mighty, Aimee Sachs had guts.  The gifted 4-foot-10 sports journalist made tough decisions decisively.

Aimee as a child, with her mom and in the hospital.

“She was so tiny, but she wasn’t easily intimidated,” said Samantha “Sam” Sachs, Aimee’s older sister.

In May of 2023, Aimee’s courage was on full display. After suffering two strokes in two weeks, the 38-year-old was diagnosed with locked-in syndrome, a rare disorder of the nervous system. Paralyzed except for the muscles that control eye movement, she was conscious but could not move or speak.

With family gathered around her HCA Florida Capital Hospital bed, Aimee’s father, Ron Sachs, founder of Sachs Media, broke the news to his middle-of-three daughters.

“Dad told her she would never walk, talk, feed herself, bathe herself,” Sam said. “He asked her to close her eyes if she didn’t want to live that way. Then he also asked her to close her eyes if she still wanted to be an organ donor.”

Aimee Sachs made both decisions with the blink of an eye.

“She closed her eyes fast and hard,” said Sam. “It was heartbreaking, but it was also very moving to see her take control of her life in the only way she could.”

Aimee fell in love with baseball early on.

Aimee was winning in the game of life. A bona fide baseball fanatic, she fell in love with America’s past time at the age of 7.

Sam said her little sister’s passion for sports was ignited while on a father-daughter trip to see the Atlanta Braves. She fondly remembers Aimee gazing into the eyes of their father and delivering this heartfelt message.

“She was looking up at our dad and saying, ‘The field is so beautiful. I love baseball so much. Thank you for taking me here, and you really need to trim your nose hairs Dad.  I just love this game so much.’,” Sam said, amused. “Baseball was her passion from then on.”

The nose-hair comment, though unexpected, was fitting. Aimee had a diabolical sense of humor that came in handy with the petite journalist in a male-dominated profession.

“She would say or do something completely unexpected, and you would just lose it laughing,” said Sam, often in the crosshairs of Aimee’s pranks. Once Aimee deleted Sam’s entire Napster account along with hundreds of songs she had downloaded from the Internet.

“She was so amused when she heard me screaming from the home office,” Sam said.

Aimee pursued a career in sports journalism after she graduated from the University of Florida in 2007 and started her career at the Tallahassee Democrat. She worked at various outlets as a freelance sports reporter, including the Associated Press, the Tampa Bay Times, The Trentonian and the Bradenton Herald.

Aimee’s favorite job was covering her favorite Major League Baseball team, the Atlanta Braves, for MLB.com.

Aimee’s petite frame stood out among athletes and coaches.

“We have this picture of two high school coaches lifting her up on their shoulders, and you could see the size difference between them,” Sam said.  “It’s hilarious.”

On May 20, 2023, Aimee felt immobilizing neck pain and called 911. She was taken to HCA Florida Capital Hospital, where doctors said she suffered a mild stroke. Her condition was improving. She was learning to walk again with the help of physical therapists and was expected to make a full recovery.

Eight days later, while sitting with Aimee in the hospital, Sam said her speech began to slur, and her smile drooped. She pointed to her chest and mouthed the words “hard to breathe.”

Aimee had suffered a second stroke, this one more incapacitating than the first. The day after her massive stroke, Aimee woke up.

“She was completely conscious and aware of what was going on around her,” Sam said. “She could understand everything that was happening, but was unable to communicate except that she was able to blink her eyes.”

Aimee registered to be an organ donor years ago and remained steadfast in her decision. A few months before she passed, she reiterated her choice to donate while talking with a friend.

“My sister emphatically told my roommate that she wanted to be an organ donor someday if she was in a situation where she was at the end of her life and could not be saved,” Sam said.

Aimee’s life peacefully ended in a hospital operating room on May 31 with her father and big sister by her side.

“It was a privilege for me to be there with her,” Sam said. “I held her hand, and my dad stroked her hair and her face. We both told her how much we loved her. My dad told her that she wasn’t going to suffer anymore.”

Aimee enjoying the beach.

Just like that, fun fearless Aimee was gone. But her beautiful legacy lives on. Aimee saved three people through her Gifts of Life. Two men, ages 19 and 24, each received a kidney. Aimee’s liver was donated to a 42-year-old woman.

“I am so deeply proud of Aimee and the choices she made at the end of her life,” Sam said. “She was braver than the rest of us because we were all terrified about what was happening. She took control of her life and made the choice to give life to three other people.”

Doctors, nurses, unit and other hospital staff lined the hospital hallways to silently pay their final respect during Aimee’s Honor Walk, the journey that a donor family takes from the intensive care unit (ICU) to the operating room (OR). The Sachs family walked behind Aimee’s bed during the sacred ritual.

Sweet music filled the air reflecting Aimee’s Jewish heritage. “L’Chi Lach,” by Debbie Friedman. It was Aimee’s favorite song.

L’chi lach, to a land that I will show you
Leich l’cha, to a place you do not know
L’chi lach, on your journey I will bless you
And you shall be a blessing

“Organ donation is such a selfless caring act,” Sam said. “Nobody anticipates that their life will end abruptly or that they will be in a situation where their organs can be donated, but it is such a gift and will provide you with a lasting legacy of generosity to check that box when you sign up for a license, or to go to DonateLifeFlorida.org and register to be an organ donor.

“It may never happen, but on the chance that it does, you’ll be giving an incredible gift to people who are in dire circumstances.”

Aimee enjoyed spending time with her family and friends.

Aimee would have turned 39 on November 10. Sam recently came across a gift her sister had given her, a tea set, just like one she and Sam played with when they were little. Aimee had accidently broken some pieces from the original tea set.

“I opened the box, and there was a gorgeous ornate miniature tea set inside,” Sam said. “I can’t believe I was lucky enough to be her sister for 38 years.”

Aimee’s father said he misses her every day.

“It’s hard to compare anything in life to the great gift of having children whom you bring into this world and love so dearly,” Ron said. “We are mostly comforted by our memories and the great gift of having Aimee in our lives for all of her 38 years. And, we rejoice in our pride for her selfless decision to extend her life’s impact and meaning by donating her organs as the ultimate Gift of Life to others.”

(By Kim Gilmore, Sr. Public Education Coordinator)

A Second Chance to Save a Life

July 2023:

Second chances don’t come around often.  So, when Leander Smoot was given the opportunity to donate one of her kidneys to save the life of a friend, she felt compelled to do the right thing.

“When I first read her email, I definitely went back and forth,” said Leander, who lives in Pensacola and works as a clinical transformation specialist at Ascension Providence in Mobile, Ala. “I wish I could say I jumped at the chance the very next day, but that wasn’t the case. I was nervous, but I felt God put this on my heart for a reason.”

Leander at UF Health Shands Hospital.

Leander said she saw the email plea in January of 2015 and felt a calling. She watched and waited while other candidates were being evaluated as potential donors. None of them were compatible.  After much soul searching and prayer, Leander took the necessary steps to get screened. That was January of 2017. Nine months later, she was in a hospital gown, undergoing surgery at UF Health Shands Hospital in Gainesville.

“I knew there was a reason I was feeling called to help her, and I couldn’t ignore it,” said Leander.

The reason was Tommy Jr., Leander’s half-brother. In 2006, he was diagnosed with liver cancer. By January of 2008, the disease had advanced to stage 4. Leander wanted to help him but didn’t know how.

“I began researching, which is when I realized living donation existed,” said Leander.  “He then passed away only nine days later.”

While there was nothing Leander could have done to save her brother, it didn’t stop the what-if scenarios from playing out in her head. What if she had known about living donation? What if she had been able to give her brother the Gift of Life? What if she could be a living donor to someone else?

“Would I be able to go through with it,” she wondered.

Quilt squares created by donor families.

It was more than a question of courage. Leander had an extensive family history of cancer that would require careful evaluation. Her dad died from lung cancer. Her mother succumbed to breast cancer. One of her sisters had been diagnosed with an inoperable brain tumor.

“My brother and I were close, having been through so much loss together,” Leander said. “I was desperate to hold onto him, but God needed him more I guess.”

Leander is one of those people who can make it through difficult times with little trouble, where others may crumble. Confident in her faith, she said God’s signs were everywhere, and his message of hope was undeniable.

“I thought about her husband, her son and her siblings a lot,” Leander said. “I knew how devastating the loss of a parent was and knew if I could do something that I should.”

Her opportunity came while sitting down to lunch at work one day when a representative from UF Health Shands Hospital called to share the results of her screening. Not only was her kidney compatible for donation, it was a perfect match.

“I knew what God put on my heart to do was exactly what I was meant to do,” Leander said.

Six years later, it’s like it never happened. Both donor and recipient are in good health and doing well.

Leander inspires others to become living donors.

“My recovery was great,” Leander said. “I am still perfectly healthy. I work out every day, and I am more aware of how much water I drink. I made a promise to myself when I decided to donate to live a healthier lifestyle.”

More than that, advocating for donation is in Leander’s DNA. She trained to be a LifeQuest Ambassador and started the One Kidney Club Northwest Florida as a way to bring donors together and support the living donor community. She also works as a part-time donor advocate at Ascension Sacred Heart Pensacola where she shared her story at a recent flag-raising event honoring organ, eye and tissue donors.

“I was given the opportunity to help others navigate saving a life,” Leander said. “I thought, what could be a better job than that.”

In 2022, more than 6,400 transplants were made possible by living donors. Visit LifeQuestFla.org to learn more about living donation.

(By Kim Gilmore, LifeQuest Sr. Public Education Coordinator)

 

 

Fueled by Kindness

March 2023:

Alex DeFrank had a megawatt smile, a silly sense of humor and an infectious love of life. He danced offbeat, sang off-key and was forever pulling pranks on family and friends.

Alex caring for an animal.

Those closest to Alex, delighted in his tender side too. His generous spirit and reliable nature put others at ease.  And who could forget his big heart?

Whether working on his grandmother’s car, volunteering with animals, or assisting his father, Paul DeFrank, with home repairs, Alex was always first to lend a helping hand.

“He was always helping others,” said Rebecca DeFrank, Alex’s mother.  She is vision impaired and cherishes every moment her son devoted to her before his unexpected death in 2020 at the age of 22.

Now Paul and Rebecca are carrying on Alex’s legacy of kindness by encouraging others to register as an organ donor and by hosting a series of support sessions for people who are grieving the death of a family member or friend.

GriefShare is a nondenominational program offered by churches worldwide. It is designed to help people deal with the persistent agony that comes from the loss of a close friend or a loved one by gently moving them toward rebuilding their lives. Groups are hosted in more than 17,000 churches nationwide and people of all denominations are welcome.

The couple facilitate weekly sessions at Deerlake United Methodist Church, 8013 Deerlake Road in Tallahassee. The self-contained small gatherings feature videos, group discussion and workbook reflection.

Alex enjoyed fishing.

Because part of life is experiencing pain and loss, and sometimes, finding meaning in it, Paul and Rebecca are confident this is the best way they can continue to honor Alex.

On May 2, 2020, the couple received a call saying their son had been involved in a work-related accident. Alex fell from a moving golf cart and onto the pavement hitting his head multiple times. He sustained life-threatening injuries as a result. Making the tragic situation even more difficult, Paul, Rebecca, and their daughter, Ashley, were unable to be with Alex in the hospital due to COVID restrictions that were in place at the time.

In the days following Alex’s accident, hope turned into fear and eventually into every parent’s worst nightmare. Once it became evident that Alex would not survive his injuries, Paul and Rebecca realized the best way to carry on their son’s legacy was to honor his decision to become an organ donor.

A rendering of Alex fishing made by his sister, Ashley.

On May 11, 2020, Alex was declared brain dead.  Three days later he donated five organs to save the lives of four people, including a teenager, two women in their thirties and a grandfather.

“On the night before the transplant surgery, we made our last trip to the hospital to say goodbye even though we knew he was already gone,” Rebecca said. “As we left the hospital in total sadness over the loss of our precious son, we recognized that four individuals were now heading to the hospital with excitement and joy for a promising future.”

Alex registered as an organ donor when he got his learner’s permit at the age of 15.  Sharing the Gift of Life was his final act of kindness.

“While we had known about this, we never expected to be facing this type of outcome,” Paul said. “Alex understood it though.  In fact, he told his mom one day while discussing organ donation, ‘Why not donate? I won’t need them.’”

Alex and a furry friend.

Throughout their ordeal, Paul and Rebecca couldn’t help but reflect on their son’s generous nature.

Alex loved people, animals and cars, pretty much in that order. He volunteered at The Tallahassee Museum so he could spend time with the animals, and he dreamed of becoming a veterinary technician.

“Unfortunately, he realized that he didn’t have the love of math that this degree would require,” Rebecca said. “It was at this point that he decided to become a mechanic. It soon became evident that this was his true passion.”

Alex enjoyed attending Lively Technical College Monday through Thursday and working as a mechanic on Friday and Saturday.

“More times than not, you would still find him working on his truck on Sunday afternoons,” Paul said.

Not a day goes by that Paul and Rebecca don’t wish they could change the ending to their son’s story. However, their involvement in GriefShare taught them that acceptance is part of moving on.  That, and they experienced the healing power of organ donation.

“We’ve heard from all four recipients about how their lives changed for the better as a result of the Gifts of Life that Alex gave,” Paul said. “We are so very grateful for their stories. A grandmother wrote to thank us for giving her extra time with her husband.  One of the young women felt that she had a new lease on life and was no longer afraid.”

Alex loved being outdoors.

While Rebecca was a registered organ donor long before Alex’s death, Paul struggled at first with his son’s decision to donate his organs.

“Alex took us down this path,” Paul said. “We are now better for having done this.”

Paul and Rebecca are glad they honored their son’s decision to be an organ donor, and they embrace their newfound mission of sharing his life of compassion with others.

“We have gotten to tell his story to others and through honoring his life and decision, have helped others,” Rebecca said. “Paul is now a registered organ donor, along with others of our extended family and friends.  We could not be prouder of our son and the many things he did in life.  However, none was more selfless and beautiful than being an organ donor.”

If you are struggling with the loss of a friend or family member and would like to learn more about GriefShare, visit www.griefshare.org.

(By Kim Gilmore, Senior Public Education Coordinator)

Free-spirited Girly-girl

February 2023

When the doorbell jarred Cody and Kathleen Hampton awake at 3:30 a.m. on Sunday, Feb. 12, 2018, they felt sick to their stomachs. Kathleen pulled open the front door to find two Leon County sheriff’s deputies standing on her porch.  Her heart sank.

“We all know what that means,” Kathleen said, solemnly.

Over the shoulder of one of the deputies, Kathleen saw the flashing lights of patrol cars and heard sirens wailing in the near distance. Her 19-year-old daughter, Debbie, had not come home yet after a night out with friends.

“My husband and I just knew,” Kathleen said.

Debbie almost made it home safely. She was just a quarter of a mile away when she made the grave decision to unbuckle her seatbelt and bend down to retrieve her cell phone that had fallen to the floor of her car. Debbie’s vehicle hit a utility pole head-on, and she was ejected from the automobile. It is likely that she never saw the accident coming.

Debbie was taken to Tallahassee Memorial HealthCare where she was placed on life support. She was pronounced brain dead two days later.

Standing in a hospital room full of family and friends, Kathleen suddenly had an out loud aha moment.

“It’s like, all of a sudden, I realized, oh my God, Debbie’s an organ donor,” Kathleen said. “It’s like she got in my head and said, ’Mom, I’m a donor.’”

Debbie enrolled on Florida’s organ donor registry at age 18.

“She made the decision the year before to be an organ donor when she got her driver license, never thinking the next year she would become a hero to many,” Kathleen said.

On Valentine’s Day, Feb. 14, 2018, Debbie shared the Gift of Life with seven people. She also donated tissue and her corneas to help improve the lives of many others. Cody and Kathleen could not be prouder of their daughter’s life and her gifts.

“She donated most of her major organs, including her heart, and now a number of people are living because of her sacrifice,” Kathleen said.  She has written letters to all of Debbie’s organ recipients and hopes to meet them someday.

Just like that, Kathleen said her life shifted from a roller coaster ride to complete silence. Debbie struggled in school and dealt with personal trauma, but she had discovered her right path. She earned her GED at Tallahassee Community College and had landed a steady job.

“She was my angel on earth, and now she is Heaven’s angel and my daughter and granddaughter’s guardian angel,” Kathleen said.

Kathleen treasures the beautiful memory of her curly, red-headed girly-girl. Debbie loved painting and writing, as well as fashion and jewelry, and she also enjoyed wearing makeup.

“I always told her she didn’t need makeup, and she would say, ’you don’t need a bra, but it makes you feel better,’” said Katy Fisher, Debbie’s sister.

Family and friends also remember Debbie as loyal, fun-loving and a free spirit.

“She was always the life of the party,” Kathleen said, recalling a family trip to EPCOT when Debbie was 2 years old. “She was dancing and turned around and mooned me. The whole place erupted in laughter.”

The way Katy sees it, her sister viewed things through a different lens.  In Debbie’s epitaphic, Katy wrote that Debbie had a smile that “made her eyes disappear” and a laugh that “bellowed from God knows where.”

“Debbie would say, ‘it doesn’t matter how you do it, do it different than anyone else,’” Katy said. “And from her first day on earth up to her last, Debbie never failed to do things her own way.”

That Debbie was both lively and challenging inspires Kathleen. She works for Make-A-Wish and volunteers at Pace Center for Girls in Tallahassee, which provides services to at-risk teen girls.

“Helping at Pace has helped me navigate my pain and suffering,” Kathleen said.  “Affecting and impacting people in a positive way is my way of honoring my daughter’s legacy.”

To honor Debbie’s memory and the five-year anniversary of her “spirit in heaven,” Kathleen set up a campaign to raise $5,000 through Make-A-Wish, enough to grant a wish to a seriously ill child.

(By Kim Gilmore, Senior LifeQuest Public Education Coordinator)

From Fatty Liver to Sassy Liver

June 2022:

On April 5, 2017, Jerry Rosenberg of Jacksonville, Fla., boarded a cruise ship in Ft. Lauderdale with his cousin. Jerry loved to cruise and was headed first to Bermuda, then to Ireland, England and France.

Their departure from the port was delayed by five hours due to a bogus bomb threat, but once underway, Jerry went to the ship’s buffet for a late dinner, a simple act that forever changed his life.

Jerry and AJ at the Transplant Games in Salt Lake City, Utah.

Jerry got food poisoning that night, and the following morning he visited the ship’s sick bay.

“I remember going to the infirmary on Thursday,” Jerry said. “They had me call my brother and tell him they were making me get off the ship in Bermuda on Sunday.  He said he would come and help me get home.”

The next thing Jerry remembers was hearing the thump-thump-thump of the air ambulance on which he was a passenger. He slipped into a coma while at a hospital in Bermuda and was being air-lifted to the Cleveland Clinic back in Florida. By now it was Tuesday.

“I had been in a coma all this time,” Jerry said. “No one really knew what was wrong with me, and the only place that would accept me at the time was the Cleveland Clinic in Weston, Florida.”

“I didn’t realize the food had been sitting out for five hours waiting for us to be cleared to leave, and I ate something which gave me food poisoning,” he said.

Within hours of arriving at the Cleveland Clinic, doctors discovered that Jerry had a nonalcoholic fatty liver which was unable to filter the noxious bacteria found in the food he had eaten on the ship. Fatty liver occurs when fat accumulation is more than five percent of the liver weight. The fat starts to invade the liver, gradually infiltrating the healthy liver areas so that less and less healthy liver tissue remains.

Despite his dire physical condition, it never crossed Jerry’s mind that he might need a new liver to survive.

“I thought the liver would rejuvenate itself, and I would do everything I could to be healthy,” he said. “My mind started changing a few days later when I received a phone call from a close friend telling me that six of his friends had had liver transplants and all had done beautifully. He made me promise him I would do everything I could to get a liver transplant to save my life.”

Doctors in Bermuda gave Jerry less than one percent chance of surviving an airlift.

Jerry left Cleveland Clinic with his brother, AJ, who drove him straight to the Mayo Clinic Hospital in Jacksonville. On May 7, 2017, Jerry received his “sassy” new liver.

“It was the best decision of my life,” he said. “I didn’t even realize I had had a liver transplant until my brother told me the next day. That’s how sick I was.”

Following his transplant and before taking on the world again, Jerry spent seven weeks recovering and rehabilitating at the Mayo Clinic and then at a nursing facility. He was on his road to recovery.

Back to his former self now, Jerry seizes every opportunity to engage others and share his Gift-of-Life story with members of his Jewish faith and the LGBTQ community. Jerry co-owned the Metro Entertainment Complex in Jacksonville for 28 years. It was the largest gay nightclub in the southeast before permanently shutting its doors in August 2021, brought down by the pandemic.

“So many LGBTQ people are organ donors because they just feel that is the right thing to do,” he said. “Physically, mentally, spiritually, religiously — they just think it’s the right thing to do.”

In this case, Jerry’s faith and friendships coincide. He said his Rabbi recently delivered a rousing message about organ donation that inspired him.

“He said the last thing you can do is give life to others.  It is the greatest gift you can give,” Jerry said. “I just thought that was great.”

Now that he is retired, Jerry attends two support groups at the Mayo Clinic and volunteers with Big Brothers Big Sisters of America.  Twice he has competed in the Transplant Games of America, where thousands of transplant recipients and living donors from around the world contend in athletic and recreational events.

“This was a huge challenge for me, and I am proud to say that I have met some of the best people in the world who have been through a lot of the same challenges I’ve been through,” he said.

Adding to his list of accomplishments, Jerry’s team won a gold medal in bowling at the 2018 Transplant Games in Salt Lake City, Utah, and he helped set a Guinness World Record for largest gathering of organ transplant recipients — 540. He also participated in letter-writing workshops to help him find the right words to connect with his organ donor’s family. He has written them twice but has not heard back yet.

“White. Black. Male. Female.  At the moment, I know nothing about my donor,” he said.

Even so, Jerry lovingly speculates the donor of his “sassy” liver may be a woman, because soon after his transplant unusual desires and cravings emerged. Most notably, he wanted to get a pedicure.

AJ caring for Jerry after his liver transplant.

“I went to the mall and got a pedicure, and that’s not like me,” he said.

He also developed a hankering for crab legs drenched in butter.

Looking ahead, Jerry plans to attend the Transplant Games in San Diego, Calif., only this time he will serve as a helper instead of competing in events.

“Life is wonderful now,” Jerry said. “Other than lots of medications every day, frequent blood work and testing, things are back to normal. I thank God every day when I wake up for this opportunity of a second chance.”

Life came full circle in May when Jerry boarded a cruise to Bermuda, of all places.  His brother and now his caregiver, AJ, came along.

“I love cruising. I love the life. I love karaoke and hearing people sing,” Jerry said. “This pilgrimage was very important to me. My brother and I always step up and talk to people about organ donation. We told everyone on the cruise.”

While in Bermuda, the brothers visited with staff and healthcare workers at the hospital where Jerry was initially treated for his food poisoning while unconscious. They posed for pictures and delivered a simple message.

“Thank you for taking care of me,” Jerry told them. “Thank you so much for saving my life.”

By Kim Gilmore, Sr. Public Education Coordinator

Ambassadors of Life Refiring, Not Retiring

April 2022

By Kim Gilmore, LifeQuest Public Education Coordinator

Selfless love begins and ends with sacrifice. Those of us who work with organ donor families have a front-row seat to the most extraordinary acts of generosity: parents who are so inspired by their only son’s choice to donate his organs that they are willing to relive the details of his fatal accident on live radio; a widow who eagerly donates a kidney to her late husband’s organ recipient 16 years later; or a mother who donates her young boy’s organs to save lives even after he has made the tragic decision to end his own life.

In the midst of their grief, donor families have one thing in common. The goal of their giving is to give others the chance to live.

Madison’s Gifts-of-Life saved four people.

Joe and Jody Hair dedicated their lives to the mission of promoting organ donation following the death of their 19-year-old daughter, Madison, on June 22, 2012. Madison was a registered organ donor, and she saved the lives of four people.

In the years since Madison shared her Gifts of Life, the Hairs have honored their daughter’s legacy in a very public way, appearing on TV and radio in and around Bay County, Fla., where they reside.  Their warm smiling faces have grown familiar, if not comforting to many in their community.  Their strength and compassion are inspiring.

The Hairs both teach full time at Mosley High School while juggling the demands of daily life and a family. Yet somehow, they find time to host multiple assemblies each year at Mosley where they share Madison’s donation story with hundreds of incoming freshmen.

By contributing to the lives of others, the Hairs chose a journey of healing and influence they could never have imagined. A student who made the decision to register as an organ donor after attending an assembly at Mosley and who then later passed away, saved the lives of four people through his gifts of donation.

Jody and Katie share a hug on stage.

Dedication to organ donation is woven into every aspect of the Hair’s lives.  A picture of the ambulance carrying Madison’s heart to its new owner hangs above Joe’s desk at school. A photobook full of memories of Madison is displayed in the couple’s home. Both are meant to spark conversation about donation.

Not surprising, their love for Madison’s recipients is most palpable. The Hairs have been in touch with all four of their daughter’s organ recipients, and they have met with two of them so far. They hope to meet them all someday.

LifeQuest Ambassador Katie Walton received the lifesaving gifts of a liver and kidney from Madison. She and the Hairs met for the first time just a few months ago near their home in Lynn Haven. They connected instantly.

Jody and Katie recently took center stage in the Gretchen Nelson Scott Fine Arts Center at Mosley for National Donate Life Month. Katie wore a bright orange sweater, Madison’s favorite color. Jody presented Katie with an orange-tinted bouquet. Nearly 500 students and staff and a dozen or so of the Hair’s family members attended. It was their first opportunity to talk about Madison together publicly.  It was also the last time Jody will ever share her daughter’s story as a teacher at Mosley. Both Joe and Jody are retiring from teaching at the end of the 2022 school year.

                      

Katie is now a member of the Hair Family.

My heart sank when I heard the news that the Hairs planned to retire from teaching. Would they also give up promoting organ donation? Having had the privilege of working with the Hairs for the past three years, I’ve come to lean on the ease with which they talk about their daughter’s accident and gifts. Of course, it isn’t at all easy for them.

Nine years, 10 months and some days. That’s how long it’s been since the Hairs felt the warm touch of their precious daughter, Madison. It is impossible to calculate how many people have registered as organ donors or the number of lives that have been saved thanks to their humility and selflessness in that time. Fortunately, I won’t need to. The Hairs plan to travel some and then get right back out there telling others about the importance of registering your decision to become an organ donor.

Most people want to know their lives matter. Joe and Jody Hair want you to know that Madison’s life mattered. I have often heard Jody say, “This is what Madison would have wanted.”

Organ Donation is Personal to Miss Florida Contestant

January 2022:

When she is asked how to pronounce her name, Casana Fink’s reply is a little fruity.

“It’s Casana, rhymes with banana,” she quips.

Casana and her parents celebrate her graduation at the University of Florida.

Ask the 23-year-old University of Florida graduate about her passion for promoting organ, eye and tissue donation as the reigning Miss Gainesville 2022, and she gets real, fast.

“Parents just don’t really want their children to know about death and maybe one day becoming an organ donor,” Casana said. “Unfortunately, people really shy away from that.”

Educating Florida’s youth is why Casana chose to partner with Donate Life Florida.  By going public with her family’s private donation story, she hopes to improve the lives of others who are waiting for organ transplants and increase their chances of a happy ending.

Some contestants enter pageants for the glitz and glamour of winning a title. Casana is attracted to the life of service that comes with wearing the crown. Her compassion and her platform are inspired by her parents, Jim and Selena Fink.

Jim Fink in front of hospital.

Casana was just 14 years old and a freshman at Forest High School in Ocala, Fla., when her father did not show up to work one day. A family member discovered Jim lying unconscious on his bed and took him to a nearby hospital.

“We were told he was within an hour of dying,” Casana said.

Jim was diagnosed with liver failure. He spent months in and out of intensive care units. Doctors said he would need a new liver if he was going to survive. He was placed on the national transplant waiting list and eventually received a liver transplant at Jackson Memorial Hospital in Miami.

“At first doctors did not think he was going to make it,” Casana said.

Not only did Jim survive, but he is thriving. The Finks live in Ocala where Casana was born and raised. Jim co-owns a real estate appraisal company with his brother, and Selena works as a healthcare advocate.

Casana and her dad share a hug.

“That was almost eight years ago,” Casana said. “It was such a long journey rehabilitating him and getting him back to living a normal life.”

Humbled by the experience, Casana said her family relied on the generosity of others for stability and to help make ends meet. She spent hours hanging out at the Mary Ellen School of Dance, where she attended classes after school each day. Friends and extended family organized meals and kept Casana company while her father was in recovery and her mother worked long hours.

“The dance community really came together for us,” she said.

Casana credits her mother with keeping the family afloat during a difficult time. In addition to taking care of the household, Selena worked two jobs and advocated tirelessly on Jim’s behalf. Once she even insisted on meeting with hospital executives to help steer his quality of care.

“It’s incredible all the things my mom did at that time,” Casana said. “She basically shielded me from all of this. Looking back as an adult, it makes me kind of emotional. It is why I became so passionate to assist donor families and recipient families with their needs.”

In spite of all the hardship, Casana said she feels blessed and believes her family is fortunate.

“So many other families don’t have that financial security to fall back on, and it makes things so much more difficult,” she said.

Jim escorting Casana on homecoming court.

Her mother’s strength and her father’s will to survive motivated Casana to found Give to Live – Donate Life, a nonprofit focused on promoting organ donation.  She is working with Florida House Representative Joe Harding on two initiatives that would help promote Florida’s donor registry. She is also writing a children’s book about organ donation.

“I hope to make the conversation about donation more digestible and comprehensible, not so scary,” Casana said.

Prior to competing in the Miss Gainesville scholarship competition, Casana took some time for herself. She attended Conde’ Nast College of Fashion & Design in London and spent time working in New York City.

“I was missing that sense of philanthropy,” she said. “Something so amazing about the Miss America Organization is that they prioritize public service.”

Winning the Miss Gainesville title qualifies Casana to compete in the Miss Florida competition on June 25 in Lakeland. If she is fortunate to win the state title, it would mean another year in the spotlight and an even bigger audience to promote her organ donation platform.

For now, Casana is focused on fulfilling her duties as Miss Gainesville. From speaking engagements and writing books to encouraging sales of the new Donate Florida specialty license plate, she is seizing every opportunity to inform others about the beautiful Gift of Life.

“The basis of what it means to be a donor and to be a transplant community starts with education,” Casana said. “Weeding out those myths, promoting the positives and hearing those stories of transplant recipients and donor families. It all starts with funding, which comes in part from the sale of the license plate. I think it is so important to get to the goal of pre-selling 3,000.”

Donate Life Florida Specialty License Plates can be purchased online by anyone in Florida through the St. Lucie County Tax Collector’s office at: https://pay-hub.net/stlucie/donatelife/vouchers or in person at any tax collector office.

Not All Superheroes Wear Capes

January 2022:

“Zach was the one that if you were on the side of the road, and you looked like you needed help, he would stop,” said his mother, Michelle Trevellick, R.N., a case manager for the Healthy Start Nurse-Family Partnership at UF Health Jacksonville.

Zach Rabon was the type of man who walked into a room and would light it up. He was compassionate and kind, and he was very close to his mother. After losing his father to cancer in 2005, he would talk to his mom nearly every day. Some calls would just be to tell her that he loved her.

The 29-year-old father of two shared custody of his children with his ex-wife. Rabon was the kind of dad that would get on the monkey bars with his kids or put a rag mop on top of his head and pretend to be “Kyle the Surfer.” All of his children’s friends would gravitate toward him. He was “that dad.”

On the nights the children weren’t with him, he had a standing Facetime chat with them at 7:30 p.m. They talked about their days, and he never missed the call.

On the night of Wednesday, April 28, 2021, 7:30 p.m. came and went without a call from Rabon. By 8 p.m., there still was no call. Red flags went up at home, and his ex-wife started calling around to find him.

Using the tracking software in his cell phone, the family was led to Memorial Hospital in Jacksonville. Rabon had been in an accident — struck by a car while riding his motorcycle home.

In spite of wearing a helmet, he suffered tremendous injuries. By Friday morning, the trauma physicians began performing brain death testing.

“He was a fighter, and he tried to fight,” Trevellick said. “How do I describe how strong he was? Like Superman and the Hulk. I used to tell him he was from another planet because no one was that strong.”

Rabon’s injuries were too severe. This was a fight he could not win, but the superhero in him came through.

“It was God’s will that he saved others,” his mother said.

Through Rabon’s gift of organ donation, he was able to save the lives of three others, all of whom were in their thirties. Two of these individuals each received a kidney from him, and the third received his liver.

“When they had him on life support, and they said that he was not going to make it, once I got past my initial shock, I said that I knew he wanted to be an organ donor,” Trevellick said.

Not only had Rabon registered to be an organ donor, but he put himself on the registry three times.

His children, a 4-year old daughter and 6-year-old son, along with stepchildren ages 9 and 11, know that he was a donor and that after his accident, he was able to save other people’s lives.

Approximately 60 percent of the organ donors in northern Florida each year have designated their decision to donate by enrolling on Florida’s donor registry. Please visit www.DonateLifeFlorida.org to document your wishes like Zach Rabon did.

Donate Life Rose Parade Honoree

November 2021:

Kim was chosen to ride on the 2022 Rose Parade float.

More than 10 years after the unexpected death of 16-year-old William Rollings McMahon of Pensacola, his mother is getting ready to celebrate the impact and shared legacy of his life in an extraordinary way.

Kim McMahon, William’s mother and a tissue recipient, will represent the American Association of Tissue Banks (AATB) as a rider on the 2022 Donate Life Rose Parade float. Kim received donor bone during an eight-hour spinal fusion surgery to repair and strengthen her spine in 2021.

“All of those years that I was telling William’s story, I never expected that I would be the one who would become a recipient,” Kim said. “Who would have believed that our stories would have such a twist?”

Kim built her life and career around promoting organ donation and sharing her son’s story in an effort to help others and keep his memory alive. William was an active, healthy honor student when he developed flu-like symptoms just after Christmas in 2004. His condition worsened, and doctors discovered that he did not have the flu. He was in acute liver failure.

William,16, died while waiting for a second liver transplant.

He was airlifted to UF Health Shands Hospital in Gainesville, Fla., and immediately put on the transplant waiting list. William received a lifesaving liver transplant. His recovery was going very well, when he suddenly fell ill again. Five months after his transplant, William was back on the waiting list in need of a second liver transplant. Unfortunately, he passed away in May of 2005 before a matching donor could be found.

“William was not a donor when he died. He wasn’t able to be because he had developed cancer,” Kim said. “I know he would have wanted to be, and I would have wanted that too.”

For Kim, the decision to promote organ donation while juggling family and a full-time career as a Delta Airlines flight attendant was easy. It was her way of enhancing someone else’s life, even in her own time of loss.

“When I started talking about organ donation, Florida didn’t have an online donor registry,” Kim said.

The Joshua Abbott Organ and Tissue Donor Registry was launched in 2009 when Florida’s Agency for Health Care Administration chose Donate Life Florida to create a statewide donor registry, increase enrollment and educate Floridians about donation.  The namesake of Florida’s donor registry, Joshua Abbott, was a cystic fibrosis patient who advocated for years for Medicare coverage for lung transplant recipients.  Abbott, who did receive a lung transplant, passed away in 2006.

William surfed often at Pensacola beaches.

Kim touted the need for more registered organ donors for years prior to the unveiling of the statewide donor registry. She became an advocate after spending time in the pediatric ICU with her son, William, while he was waiting for his second liver.

“What I saw were parents struggling to decide whether their child should become a donor.  They had not discussed it,” Kim said.  “I know what I went through when William died right in front of me.  I didn’t want anyone else to go through that.”

Motivated by her son’s memory, Kim jumped in feet first volunteering at William’s alma mater, Pensacola High School. She was encouraged when faculty, staff and students welcomed her with open arms.

The donate4william.org logo on a tennis shoe.

“These precious teachers of William’s were devastated,” Kim said. “I went in year after year.”

Kim founded The William Rollings McMahon Organ Donation Educational and the nonprofit, donate4william.org, to provide public education and awareness.

She also sparked a successful T-shirt campaign. A devoted surfer, William’s final farewell was a paddle-out ceremony.  During the ancient Hawaiian tradition, William’s fellow surfers paddled into the ocean on surf boards, formed a circle and joined hands. A friend snapped a picture of the gathering and gave it to Kim.

“It looked like the circle of life,” she said. “It just came to me: Don’t break the circle of life.  If you choose organ donation, life will continue.”

Kim printed the circle-of-life image on 50 T-shirts and gave them to William’s friends. Soon requests for T-shirts started rolling in.  When other recipients and donor families wanted to get involved, Kim graciously incorporated their ideas and art onto T-shirts, cards and other items. She knew the campaign had taken on a life of its own when she started receiving selfies from students and strangers wearing circle-of-life T-shirts from locations around the world.

Kim in a circle-of-life T-shirt.

“It’s like a walking, talking billboard,” she said.

Kim recalled the first time she saw someone wearing a circle-of-life T-shirt.  It was on a woman at an ATM holding a baby in her hometown of Pensacola, Fla.

“I got so excited that I went up to her and said, ‘Thank you for wearing that T-shirt,’ and I told her, ‘That’s my son’,” Kim said. “It turns out she was a nurse.”

Kim partnered with Chain Reaction, a nonprofit dedicated to providing service learning, leadership development and meaningful career guidance for teens. Together, they developed a Donate Life Week in Pensacola high schools and adopted a highway on the Emerald Coast in honor of William and Donate Life.

Kim adopted a highway in William’s honor.

Kim has taken part in organ donation PSAs at the University of West Florida and appeared in the PBS documentary, Transplant: A Gift for Life. She produced an inspiring three-part videos series for social media called “Will 2 Live,” and she was featured in the Delta Airlines employee magazine, Delta Digest. She is scheduled to speak at a trauma conference in November 2021.

In honor of her giving spirit, People Magazine recognized Kim as one of 40 women who embody inner and outer beauty in the May 5, 2014 issue, according to the Pensacola News Journal.

Nowadays, the opportunity to promote organ donation seems to find Kim wherever she travels. Her message is always the same.

“Focus on the here and now,” she said. “And register to become and organ donor.”

The Rose Bowl Parade is scheduled for New Year’s Day, January 1, 2022, in Pasadena, Calif. On that Sunday, Kim will take part in delivering the Donate Life message to an audience of millions.

A rendering of the 2022 Donate Life Rose float.

The theme of the 2022 Donate Life Rose Parade float is Courage to Hope. Leading up to the parade, Kim will help place flowers on the Egyptian-styled float that features a lion and gondolas. Riders will include 40 organ and tissue recipients from throughout the U.S., including Kim.

“I still kind of have to pinch myself,” Kim said. “Secretly, I wanted to be on it.”

Kim’s remarkable ability to turn the tragedy of her son’s untimely death into advocacy connected her to organ donation in a deeply personal way. Life came full circle when she became a tissue recipient.

To her way of thinking, the stories are fatefully intertwined. She’s proud of the impact she’s made in William’s honor and for the mission it inspired within her. After losing a loved one at such a young age, she is looking forward to celebrating a milestone in her son’s honor.

“It’s all a good thing,” Kim said. “You never know when you might be in a situation to need a transplant. Never did I ever think I would be in a position to need anything. Never. Maybe this is my destiny to be on this float.”

“There’s a quote that asks, how do you know when you’ve done your life’s duty?” said Kim. “I’m not done yet.”

Student Organ Donor Advocates (SODA)

August 2021:

August is National Multiethnic Donor Awareness Month! On Thursday, August 19 at 7 p.m. ET, LifeQuest and Transplant Talk with Naishanda will host a podcast featuring a panel of multiethnic college students who are members of Student Organ Donor Advocates. SODA is a national organization that forms student leadership teams to promote organ donation on high school and college campuses. There are 39 chapters nationwide, including two in the Florida Panhandle. LifeQuest is proud to mentor chapters at The University of Florida and Florida State University.

In this Q&A, SODA Founder and President Sara Miller shares why she started the nonprofit to honor her sister and inspire student advocacy.

To view the podcast, visit https://www.youtube.com/c/transplanttalkwithnaishanda.

Q: Why are you passionate about organ donation?

“The greatest tragedy of my life has fueled my passion to save lives. When I was 12-years-old, my older sister, Laura, passed away suddenly. My family decided to donate her liver, which saved a woman’s life in New York. The devastating loss of Laura, combined with the miracle of her saving a life, has motivated me to create a platform for students across the country to advocate for organ donation and save lives.”

Q: Why/when did you start SODA?

“As a first-semester freshman at Washington University in St. Louis, I founded SODA: Student Organ Donation Advocates. We were just one chapter at the time. Since graduating in 2017, I have overseen our expansion to almost 40 chapters nationwide. Our passion is removing barriers for students who want to get involved with organ donation advocacy, and we are so grateful to support many passionate student leaders nationwide.”

Q: Had your family ever talked about donation before your sister, Laura, shared the Gift of Life?

“My family had unfortunately never talked about organ donation before we were in the difficult position of deciding whether my sister would be an organ donor. I encourage you to have a conversation about organ donation with your family today, so that if something horrible does happen, you don’t have to make this decision during such a stressful time.”

Q: You have been quoted as saying the hospital is the worst place to discuss organ donation. What did you mean?

“As you know, hospitals can be stressful environments. That’s why I recommend having a conversation about organ donation in a comfortable setting, such as at the dinner table or on the phone with a loved one, as this avoids having to make a decision about organ donation in the hospital. My family made the decision to donate Laura’s organs in the hospital, and we are so glad we did, but we also wish we had discussed organ donation before such a tragic and stressful time.”

Q: How has organ donation affected you and your family?

“My family feels grateful for organ donation. While you might typically think about “organ donors” as giving, and “organ recipients” as receiving, my family feels we gained so much from Laura giving the gift of organ donation. We feel that she is able to live on in her organ recipient, and it has helped us make sense of an otherwise senseless loss.”

Q: What was it like meeting Laura’s liver recipient?

“My family jokes that meeting Laura’s liver recipient, Trish, was our Oprah moment without the cameras. Meeting Trish was a wonderful experience. She is warm and compassionate and feels deep gratitude for the gift of life. Additionally, she helps others in her day-to-day life as both a Special Education teacher and gym owner.”

Q: Is there a misconception about organ donation that you feel others need to be educated about?

“I wish everybody knew that people of all ages can make a difference. Whether you are young or old, anybody can be an organ donor and share the life-saving message of organ donation to help save lives.”

Q: Describe the perception of organ donation among today’s youth.

“Students are often eager to learn about new topics, explore different ideas, and to make a difference. We have found the students are a terrific audience to educate about organ donation, both because they often support the cause, and because they are open-minded about new ways to make a difference.”

Q: How/why do you believe students can impact the future of organ donation?

“There are tangible ways student leaders nationwide make a difference in the future of organ donation – in particular, students can help educate their peers about organ donation and register them as organ donors. But there are also intangible benefits, which we like to call ripple effects. The conversation that a student has with their teacher can lead to many subsequent conversations which can make meaningful impacts on people’s interest in supporting organ donation. It all starts with one conversation!”

Q: Do all SODA members have a donation connection?

“When I started SODA, I had thought that most students would have a personal connection to organ donation, like me. However, I have loved meeting student leaders nationwide, who each have a different reason for getting involved. For some, they want to be a transplant surgeon. For others, they heard a powerful presentation about organ donation in high school that inspired them to make a difference. Regardless of how students hear about organ donation, we encourage them to get involved and share the importance of organ donation with their peers.”

Q: What is your vision for SODA?

“When I started SODA back in 2014, my vision was that we could create a seamless and meaningful way for students to get involved by starting an organ donation advocacy chapter at their school. I’m excited that we have built that! Now, we’re working to make sure that all students, regardless of their ability to commit to starting a chapter, can get involved and share the importance of organ donation with their communities. I’ll tell you more about that in the next question!”

Q: How can students start a chapter or host an event?

“Whether you have a few hours to devote to organ donation advocacy right now, or a few hours each week to commit to the cause, we want to support your life-saving efforts!”

“At SODA, we have two primary ways to get involved:

1. Host an event: Only have a few hours here and there to advocate for organ and tissue donation? Hosting a SODA event is a quick and easy way to educate your peers and register them as organ donors.

2. Start a chapter: Looking to create a lasting legacy and dedicate a few hours each week to organ and tissue donation advocacy? Lead a SODA chapter on campus with a group of your peers and host events together.”

“Learn more and get started at sodanational.org/students.“

NFL Wife Continues Husband’s Legacy

August 2021:

After Jacksonville native and former Buffalo Bills player Leonard Wayne Larramore died while waiting for a heart and kidney transplant, his wife Naishanda decided it was time to speak directly to communities of color.

“I truly believe my husband would be alive if more people were organ donors,” Naishanda said. “Now his name will live on through me and my efforts to bring awareness to the importance of registering to become an organ donor.”

To honor the memory of her husband, Naishanda started a podcast on YouTube. Transplant Talk with Naishanda is designed to educate minorities about organ donation and save a thousand lives by registering donors from multiethnic communities.

LifeQuest is proud to partner with Naishanda’s mission by providing guest speakers each Thursday at 7 p.m. Eastern Standard Time in the month of August. One voice. One vision. To save and heal lives.

The series of four podcasts will feature an inspiring multiethnic donor story on Aug. 5, a chaplain chat on Aug. 12, and a panel of multiethnic youth on Aug. 19.

Legendary Dr. Clive O. Callender will be our guest on Aug. 26. A trailblazer in minority organ donation, Dr. Callender founded the National Minority Organ Tissue Transplant Education Program (MOTTEP).  The Howard University Hospital surgeon focused his career on increasing awareness of transplant medicine among multiethnic segments of the population.

     

Ethnic minorities make up nearly 60 percent of the people waiting for lifesaving organs but only a third of registered donors, according to United Network for Organ Sharing.

August is National Multiethnic Donor Awareness Month (NMDAM), a collaborative effort by the National Organ, Eye and Tissue Donation Multicultural Action Group to improve the quality of life in diverse communities by creating a positive culture for organ, eye, and tissue donation. NMDAM stems from National Minority Donor Awareness Week, founded in 1996 to bring more awareness to health disparities and organ donation and transplantation’s impact in minority communities.

Our voices are united to address the number one problem in transplantation: the gap between the demand for organ transplants and supply of donated organs. There is a critical need for multiethnic registered donors.

There are more than 106,000 patients on the national transplant waiting list. Of those, there are more than 3,400 Blacks on the waiting list. There are about 21,900 Hispanics and more than 9,000 Asian Americans on the waiting list. About 80 percent of those who are waiting need a kidney.

In 2019, nearly 40,000 transplants brought renewed life to patients and their families and communities (from close to 11,900 deceased and about 7,400 living donors). Another person is added to the nation’s organ transplant waiting list every 10 minutes.

For Naishanda, the importance of organ donation hits home. April 25, 2021, marked the three-year anniversary of the death of her husband, Leonard.

“I know in my heart I must continue this journey and help bring awareness, especially in the African American community,” Naishanda said.

To learn more about organ donation or to register as an organ, eye and tissue donor, visit https://www.donatelifeflorida.org/.

To view Naishanda’s podcasts, visit https://www.youtube.com/c/transplanttalkwithnaishanda.

A Purr-fectly Heartfelt Surprise

July 2021:

Debbie listens to her son’s heartbeat inside Danny.

Danny Martin was intentional about the gifts he gave Debbie Shriner the first time they met near her home in Nassau County, Fla. In one hand, he held two dozen roses that symbolized the gratitude he felt toward Debbie and her son, Branden, an organ donor from whom Danny received a kidney and heart.

Draped around Danny’s neck was another gift, a stethoscope he imagined would strengthen his and Debbie’s bond for life. Debbie used the stethoscope to listen to her son’s heartbeat inside Danny.

The experience was unforgettable, and Danny and Debbie kept in touch. Months later and hundreds of miles apart, Danny wanted to do more to show his appreciation. He came up with a heartfelt idea while talking with a friend who is also an organ recipient.

“I called Debbie and asked her what kind of animals did your son like,” Danny said.

As it turned out, Branden had a pet tuxedo cat named Baxter who meant the world to him. They went everywhere together. Baxter passed away shortly after Branden became an organ donor.

Branden shared the Gift of Life with Danny.

“Branden and Baxter were inseparable,” Debbie said.

Hearing that, Danny went to a nearby Build-A-Bear Workshop where he stuffed a cat with fluff and dressed it in a tuxedo. He mailed it to Debbie’s home in Fernandina Beach.

“Right away she fell in love with the cat and cuddled with it,” Danny said.  He texted Debbie to make sure she had received his gift.

Months passed before Danny and Debbie talked again. Then on Mother’s Day, it occurred to Danny that he had forgotten to tell Debbie about the most important feature of the tuxedo cat he had made for her. This time, Danny called Debbie on the phone.

“Did you ever squeeze the paw of the cat?” he asked.

Danny had placed a voice recorder inside the stuffed animal. By squeezing the cat’s paw, Debbie was able to activate the sound of  Branden’s heartbeat.

“She fell out,” Danny said. “She knew right away what it was.”

Debbie and Danny had lunch at a restaurant where Branden worked.

For months, the tuxedo cat had been displayed on a shelf. All that time, its costume had concealed its true gift.

“I had no idea I was supposed to press the paw,” Debbie said. “It was wearing boots, so I just hadn’t thought about it.”

Debbie said tuxedo cat has a permanent home in Branden’s bedroom, which doubles as a guest room for family and friends. Occasionally, she will listen to Branden’s heartbeat in its new home.

“Hearing Branden’s heartbeat means a lot,” Debbie said. “I go in there and listen to it sometimes. It’s always like, ‘aw.’ People are always like, ‘aw.’”

 

Something to Talk About  

May 23, 2021:

Jennifer Banks Wilson is a walking, talking billboard.

“It’s one of the best ways I can bring up a conversation about organ donation,” said Wilson, whose 8-year-old daughter, Holly Bunting, died in a car accident. She donated Holly’s organs and saved four lives.

Since then Wilson has transformed her body into a vibrant living memorial to honor her daughter and her gifts. She dyed her hair blue and green, the colors of Donate Life. She also covered her left shoulder and arm with cheerful, childlike tattoos.

“I just went for it,” Wilson said. “All I was thinking about was being able to help another mother not feel like I was feeling.”

Wilson’s life hurled into chaos the day her daughter passed away in front of her childhood home. Privately she grieved Holly’s passing. Publicly she wanted to draw attention to her brief life well-lived. Holly was always smiling. Her days were filled with color. She loved to dance and paint, and hoped to be famous someday.

Wilson’s bold-tinted locks were meant to reflect Holly’s zest for life. She knew she was on to something more when strangers stopped her on the street to ask what’s up with the hair.

“When people asked me about my hair, I’d bring it back to organ donation,” said Wilson, who wondered what else she could do to draw attention. Why not give them something to talk about?

Over time Wilson added four tattoos inspired by her daughter’s first-grade artwork. Sunflowers. An armadillo. Cardinals. Cherry blossoms. Each design represents a life Holly saved through organ donation. Wilson also had Holly’s signature tattooed on her left wrist.

“Most people are like, your green hair and tattoos are awesome,” she said. “Right now my hair is faded beautifully, no blue, a really light green.”

Wilson, who’s been featured on television and in articles, welcomes the positive attention she receives and ignores any detractors. Losing a child has a way of putting little things in perspective.

“Hair is just hair,” she said.

One more tattoo and Wilson’s sleeve will be complete, though it is not easy to predict when or if it may happen.

“When I meet the little boy who got Holly’s heart, I want to have it tattooed on my arm,” she said. “He was four at the time.”

 

Madison’s Room

February 24, 2021:

A daddy’s girl through and through, Madison Hair loved hanging out with her family. She also cherished the time she spent at home in her bedroom. Like many young people, it was the one place she could call her own; her sanctuary.

For seven years, Madison’s bedroom on Mary Louise Drive provided a safe place to express herself and be alone with her thoughts. The former high school cheerleader listened to music and played with her pet hamsters and Siamese cat, Sushi. She studied, sketched and penned letters to family and friends in the stillness of her room.

Stuffed animals on Madison’s bed.

Jody Hair, Madison’s mother, lovingly remembers her daughter talking and laughing on the phone with friends for hours.

“Often, she would just lay on her bed and read or watch a movie,” said Jody, a science teacher at Mosley High School in Lynn Haven, Fla., where Madison attended classes. Joe Hair, Madison’s father, also teaches science at Mosley.

On June 22, 2012, Madison left her bedroom after preparing to have dinner at her boyfriend’s house.  She was involved in a fatal accident in northern Bay County while driving there. She was 19 years old and a registered organ donor who saved four lives through her gifts.

“We didn’t know who would receive Madison’s organs, but we knew that within days several deserving people would get a very special phone call,” Jody said.

Madison’s nightstand just as she left it.

In an instant, the bedroom where Madison had grown from pre-teen to college freshman became frozen in time, right down to a dog-eared page of The Hunger Games’ book she was reading the night before her accident.

In the weeks and months after Madison passed away, her family found it hard to be in the house without her. After all, it was Madison’s house, too, and it felt like she should still be there, just around the corner in the kitchen and especially in her bedroom, where every detail reflected her brief life.

“A part of me wanted to leave Madison’s room exactly the way it was, a time capsule of sorts,” Jody said.

Notes pinned to Madison’s bedroom door.

Rather than sift through the painful memories of Madison’s belongings, Jody closed the door to her daughter’s bedroom and visited occasionally. At times, Madison’s bedroom was a place of comfort. At other times, it was too much for a grieving mother to bear.

“I could lay on her pillow and look around her room at all of her memories,” Jody said. “That is what we had now, memories.”

For nearly a year, Madison’s room stayed the same. Then her younger brother, Joey, dared to ask the unthinkable. Madison was the oldest child, so she had the larger bedroom. He wanted to make it his own.

“Madison now lived in heaven, and Joey wanted to enjoy the extra living space,” Jody said. She initially told her son ’no way’.”

How could a grieving mother change the bedroom where her daughter grew up? How could loving parents get rid of the personal touches that made their daughter’s room unique?

The answer is they had to.

“We knew we had to move on,” Jody said solemnly.

A dear family friend and co-worker of the Hairs, taught photography at Mosley High School. He agreed to memorialize Madison’s precious memories in photographs. The assignment was deeply personal to him. He had served as a chaperone on many of Madison’s class trips. He was also the first person to arrive at the hospital on the night of the accident and later led a memorial service for Madison in the school’s gymnasium.

Focusing on the intimate details of Madison’s life, he captured dozens of beautiful images from the jewelry on her dresser and inspirational quotes on her walls, to pictures with her friends and clothes hanging in her closet. He arranged and submitted the pictures to an online publishing company that assembled them in a hardback book as a keepsake.

Images from the photobook of Madison’s bedroom.

Jody had found her time capsule. Perhaps most touching is a picture of Madison’s bedroom just as she left it after preparing for dinner that fateful night, a snapshot in time.

“The photobook was a perfect way to hold time in place,” Jody said. “We can open the book and always remember Madison’s bedroom just the way she left it.”

Images in the book reveal how Madison’s tastes changed over time. She traded her dark hand-me-down furniture in favor of antique white and added vivid pops of color to her room. Together, mother and daughter painted the walls orange sherbet. It was the perfect backdrop to Madison’s crowded corkboard and posters of her three favorite cities: London, Paris and New York.

Madison’s favorite Bible verse.

The photobook celebrates Madison’s love of God, family and simple things. A picture of Sushi taped to her dresser mirror. A water globe from the Big Apple prominently displayed on a shelf.

However, the crowning jewel in Madison’s bedroom was a Bible verse painted prominently above her purple heirloom bed; 1: Corinthians, Ch. 13, verses 4-5.

Once the photobook was complete, Joey moved into Madison’s bedroom. He painted the walls smoky gray but left them bare. He kept an orange donor bracelet on his nightstand.

The photobook rests on a shelf in the Hair’s den where they can easily share it with family and guests. A bittersweet reminder of two donor heroes who gave the Gift of Life.

The Hair’s friend and co-worker who authored Madison’s photobook retired from teaching in 2016. He suffered fatal injuries when hit by a truck while riding his bicycle on the first day of the next school year. Like Madison, he was a registered organ donor. He shared the gifts of tissue and bone.

Madison was number eleven on the soccer team.

“This book, at times, will initiate tears, and at other times laughter,” Jody said. “While we are looking at it, we will often start sentences with ‘Remember when,’ ‘Just imagine,’ or ‘I wonder if’.”

To illustrate, Jody offered up the time she and Madison visited a feed store to buy a rabbit and came home with a kitten.

“We pulled into the driveway, and I told Madison not to say anything to her daddy yet, we would have to prepare him for our new pet,” Jody said. “Madison marched into the house and yelled, ‘Daddy we got a kitten’. So much for slowly breaking the news.”

A match made in heaven, Sushi slept on Madison’s bed and lounged on her windowsill from that day forward.

“Both lived until 19 years of age,” Jody said. “Sushi joined Madison in heaven in February 2019. She was a very special, spoiled cat, and Sushi knew all of Madison’s secrets.”

The Hairs meet one of Madison’s organ recipients.

At first, it was difficult for the Hairs to imagine that their world would go on after losing their only daughter. Discovering a way to cope with their grief strengthened their bond to Madison, making it possible for them to move on with their lives.

“We knew that we would grieve over Madison’s death, and we agreed that grieving should be healthy,” Jody said.  “Looking at photos keeps Madison’s memory alive.”

The Hairs also host multiple assemblies each year to share their daughter’s donation story with hundreds of incoming freshmen at Mosley. LifeQuest staff frequently participate in the organ donor presentations.

“That we could honor Madison’s wishes and donate her organs was helpful with our grief,” Jody said. “When we speak to the students at our school, our goal is to encourage them to discuss organ donation with their family. We inform them on the process of registering to become an organ donor.”

“Each year, students will often display their new driver licenses proudly showing that they are registered organ donors.”

 

 

Back In The Game

February 17, 2021:

It had been a day like any other day. Cielita Clausell dropped off her son, Jaylen, at basketball practice after work. On the way home, she pulled into a church parking lot and checked her email. She was expecting a message from the organizers of a football camp Jaylen had attended that weekend. Having found what she was looking for, Cielita went on her way.

Jaylen at a photo shoot.

“By the time I made it home, I got the call Jaylen had collapsed,” she said. “By the time I got back to the high school, the ambulance was there.”

Cielita was not overly concerned at first. Jaylen seemed to be the epitome of health. He was a star athlete at Pine Forest High School in Pensacola, Fla.  The 16-year-old sophomore routinely dazzled fans with his physical fitness and athletic ability.  He had earned 11 college scholarship offers and was living the dream.

But calm turned into worry when Cielita saw her son’s lifeless body lying on the gymnasium floor, surrounded by players, as his coaches and paramedics performed CPR on him.

“I went bouncing in the gym smiling, like, where’s my kid?” Cielita said. “Then I saw a guy doing chest compressions on him.  I don’t know, that was the worst feeling I’ve ever had.”

Cielita watched helplessly as paramedics worked to revive her son. Several minutes passed before they were able to detect a faint pulse. In the next 72 hours, Jaylen was transported to four hospitals, where nurses and doctors worked feverishly to stabilize him and diagnose his condition. All the while, he lay unconscious.

“We were waiting to see how Jaylen would respond to his medication when he opened his eyes,” Cielita said. “My boy looked right at me.”

Jaylen’s story made headlines.

Naturally, Cielita went into mom mode. She looked into her son’s eyes and explained to him that he was very sick. Then Jaylen lost consciousness. That was during spring break on March 28, 2018. He spent five days on a ventilator, or life support.

“It happened on a Wednesday,” Cielita said. “Jaylen woke up at Mayo Clinic Hospital in Jacksonville on Easter Sunday. A week later they put a defibrillator in his chest.”

An automated implantable cardioverter defibrillator (AICD) is similar to a pacemaker. The device restores a normal heartbeat by sending an electric pulse or shock to the heart. They are used to prevent or correct an arrhythmia, a heartbeat that is uneven or that is too slow or too fast. Defibrillators also can restore the heart’s beating if the heart suddenly stops like Jaylen’s did.

Jaylen was released from Mayo Clinic Hospital two weeks after having the AICD implanted into his chest. Eager to move on with their lives, mother and son returned home to Pensacola and went back to normal.

The Clausells are a tight-knit family.

Five months later, Jaylen collapsed again while visiting at a friend’s house.

“When he went into cardiac arrest this time, the defibrillator shocked his heart about 27 times,” Cielita said.  “God did that. I don’t see any other way it is possible than with God.”

Doctors diagnosed Jaylen with arrhythmogenic right ventricular cardiomyopathy, or ARVC, a rare genetic condition that weakens the heart and causes it to beat abnormally. Jaylen was placed on the national organ transplant waiting list. His heart was failing, and he would need a transplant if he was going to survive.

More than 109,000 women, children and men are awaiting life-saving organ transplants. The average wait time for heart transplants is more than six months. Thanks to the generosity of an organ donor, Jaylen received a heart after waiting just two months. On October 25, 2018, he received the precious Gift of Life.

Jaylen’s high school graduation picture.

“Organ donation gave me a second chance at life, and I’m very grateful for that opportunity,” said Jaylen, who turns 19 years old on March 11. “It will allow me to follow my dreams.”

And what are Jaylen’s dreams?

“I’m still a young man,” he said. “I’m still trying to figure it out.”

One thing is certain. The Clausells recently moved to Jacksonville, and Cielita vowed that no matter where she lives, she will share Jaylen’s story to honor God and the donor who saved her son’s life.

“I gain something from it every time, it never gets old,” Cielita said. “God sends a powerful message when his glory is shared.”

 

 

Read Jaylen’s testimonial below.

A Gift’s Long-Lasting Ripple Effect

February 9, 2021:

Nancy and Kelly Burke both grew up in Tallahassee. They graduated from Florida State University, got married, found jobs, bought a house, and then became pregnant. Nancy had always hoped for four kids – two boys and two girls.

Kelly and Nancy Burke

Once pregnant, Nancy developed a terrible cough. She visited a pulmonologist in October 1988, and he alarmingly told Nancy that her heart was very enlarged. This came as a shock. Nancy had no prior health issues and lived an active lifestyle. She started medications in hopes that her enlarged heart was temporary.

On March 30, 1989, Nancy gave birth to Sarah. A couple of months later, Nancy visited her cardiologist, and learned that she had cardiomyopathy. The need for a heart transplant entered the conversation.

Heart transplants were not too common at the time. Tallahassee Memorial Hospital (TMH) had a heart

Transplant quickly became reality for the Burkes. On November 10, Nancy experienced extreme fatigue, weakness and vomiting. She was rushed to the TMH Emergency Room, where she was listed three days later to await a transplant.

Miraculously, Nancy received her heart transplant on November 20, one week after being listed. She went home eight days later, ready to be reunited with her 7-month-old daughter.

The Burke and Brubaker bond is strong.

Nancy wrote her first thank-you note to her donor family within six months.

“I didn’t know how long my transplant would last,” Nancy said. “There had been no long-term stories. If things went bad, what would I regret? I’d regret not reaching out to them.”

Nancy and her donor family exchanged many letters. At five years post-transplant, Nancy wanted to give her donor family the opportunity to meet one another, so they went through the procedures for exchanging personally identifying information.

On the way back to Louisiana from a Disney family vacation, the family of Nancy’s donor, Tammi Brubaker, visited the Burkes in Tallahassee. A relationship blossomed, and the two parties would alternate visits, developing a friendship that has lasted more than 25 years.

Eight years post-transplant, Nancy wanted more children. The four she had initially hoped for was no longer an option.

“Faith is a big part of my life,” she said. “I asked God to take the desire for more children away. He didn’t.”

Nancy’s doctors knew of only one other heart transplant recipient who successfully gave birth. Doctors warned Nancy that pregnancy could endanger her life.

On March 24, 1997, Nancy and Kelly welcomed their son, Ryan, into their lives.

The Burke and Brubaker relationship has remained extremely close throughout the years. Both families gathered in Louisiana in November 2019, and they celebrated the 30 years Tammi’s gift has provided to Nancy.

Ryan, Nancy and Sarah celebrate the Gift of Life with a heart cake.

“The fifth anniversary of my transplant seemed like a huge thing,” Nancy said. “I never imagined 30 years, and it lasting this long.”

However, on November 29, 2019, Nancy was listed at Jacksonville’s Mayo Clinic Hospital to wait for her second heart transplant. She received that heart on January 12, 2020.

“Donation is the greatest gift you can give someone,” Nancy said. “It’s the most selfless gift because you won’t know the impact – where it goes, who it goes to. The ripple effect of that is greater than anything. It’s the ultimate gift.”

………………………………….

Learn more about Nancy and her family at …

https://www.wtxl.com/news/the-gift-of-life-how-one-family-s-gift-is/article_d96ef3ca-de0a-11e6-a313-7b47425696b6.html

 

Two Transplants Strong

January 25, 2021:

“Every transplant is a different journey,” Deborah Labud said. “Both of mine have been totally different journeys. I have different issues with my second transplant, but my breathing is awesome.”

Deborah and her granddaughter at the Transplant Games of America.

While in her early 30s, Deborah suddenly began experiencing breathing troubles. After multiple doctors’ visits and misdiagnoses, at 36 years old, it was determined she had Alpha1 antitrypsin deficiency, a genetic lung and liver condition.

Beginning in 1995, Deborah was put onto oxygen 24 hours per day, seven days per week. Two years later, her lung capacity declined to just 17 percent. She was listed to await a lung transplant.

While she waited, Deborah was inspired by another transplant recipient to make a bucket list. She created goals of traveling more, competing in various athletic events and spreading the word about the importance of organ donation.

She waited for four years, four months and 22 days, when she received her life-saving gift. On November 22, 2001, Thanksgiving Day, Deborah received a lung transplant at UF Health Shands Hospital in Gainesville, Florida.

Deborah and her grandchildren being interviewed by local media at a biking event.

Deborah’s lung transplant allowed her to accomplish many feats. Seven months post-transplant, she completed a 12-mile bicycle ride. Over the years, she attended seven Transplant Games of America, and she finished two half-marathons. She even participated in five, three-day-long bicycle rides around Cape Cod, Massachusetts. She visited Barcelona and Hawaii. Another milestone Deborah cherishes was meeting her donor’s mother.

In 2002, Deborah began volunteering with LifeQuest Organ Recovery Services, sharing her story to educate others about organ donation. In January 2005, while helping LifeQuest at a race benefitting blood donation, Deborah was encouraged to apply to work for LifeSouth Community Blood Centers, the local blood supplier.

Deborah became a phlebotomist, then a blood donor recruiter, a role she would fill for 14 years serving the Ocala and Gainesville communities.

Deborah visiting with one of the doctors who treated her at UF Health Shands Hospital.

In 2017, after many years of great health, Deborah started experiencing lung problems again, and she was hospitalized following a trip to Chicago. Her right lung was expanding, impacting her transplant.

In September 2018, she was listed for a second transplant, this time, for her native lung. She received her transplant three months later, on November 28, 2018, once again around Thanksgiving.

Deborah also became a recipient of her work with LifeSouth. She used 20 units of whole blood, 12 units of platelets and three units of plasma during her surgery.

She is continually grateful for her Gifts of Life, and the life she is able to experience with her three children, seven grandchildren and six great-grandchildren.

“Organ donors are heroes,” Deborah said. “They’re definitely generous to sign up and be donors because they can save so many lives. They give others opportunities to watch loved ones grow, have kids, graduate, get married. It’s amazing what can be accomplished from one donor’s gift.”

…….

Click here to read about Deborah’s chance meeting and 50-year friendship with transplant recipient Karen Rodgers.

Fourth Quarter: LifeQuest Ambassadors of the Month

Throughout 2020, LifeQuest Organ Recovery Services has recognized Ambassadors of the Month to bring more attention to those who generously volunteer much of their time to organ donation outreach. In this blog, we showcase our three ambassadors for the fourth quarter and ask each of them questions related to their time volunteering.

 

October Ambassador of the Month:  Shechinah Butler

1. What caused you to become an ambassador?

“I am becoming more comfortable to share my story as a way to inspire others. Being an African American, it’s not a topic thoroughly discussed, and I can possibly be the person to give a sense of comfort that it’s okay to talk about.”

2. Why do you find being an ambassador important?

“Being an ambassador allows me to connect with others who share the same experience, as well as those who are beginning their own journey.”

3. What do you enjoy about volunteering?

“I have always enjoyed volunteering and serving others in the community in different aspects of life.“

4. Why would you encourage others to become LifeQuest ambassadors?

“Being a LifeQuest ambassador allows us to be living testimony to others. When you can tell your story, it gives them a chance to see that things are possible, and that is with any situation.”

5. Why do you encourage others to register as organ donors?

“I always inform others that I am not trying to make them become an organ donor, but I always encourage them to research the option of becoming one. Being able to help someone is a blessing not only to the person you are helping, but to you as well.”

 

November Ambassador of the Month:  Rosetta Hylton-Anderson

1. What caused you to become an ambassador?

“Working as a nurse, I came in contact with people who lost their lives because they needed an organ transplant. As an African American, I knew organ donation wasn’t popular with Blacks. I became interested in promoting the truth.”

Rosetta helped organize National Minority Donor Awareness Month in Quincy.

2. Why do you find being an ambassador important?

“Once, a young man was involved in a motorcycle accident in the Turks and Caicos. He was flown to the hospital where I worked in Coral Gables. I met his parents and asked them if they would donate his organs. They said, yes. I later flew to the islands where his parents met the man who received their son’s organs. During the reunion, the donor’s little girl told the recipient that they would be friends forever because he had her daddy’s organs.”

3. What do you enjoy about volunteering?

“My favorite part is when I am able to see a donor family and a recipient family come together. When families meet, they usually become close.”

4. Why would you encourage others to become LifeQuest ambassadors?

“Because it is the right thing to do. I would encourage others to volunteer because, if you have nothing else that makes you feel great about your life, doing this gives you something to be proud of.  Being able to help save lives is big and something to feel good about.”

5. Why do you encourage others to register as organ donors?

“It takes you to the core of your spirituality. If you are a Christian and you know He arose to give you life, why would you not give life to someone else if given the chance?  It doesn’t matter if you are Baptist, Catholic or whatever. Anyone can feel good about doing that. It’s just real. I don’t care who you are. Being an organ donor takes you right where you need to be.”

 

December Ambassador of the Month:  Katie Walton

Katie sharing her donation story at Tribute to Life.

1. What caused you to become an ambassador?

“As a multi-organ transplant recipient, I became acutely aware of the shortage of available organs for transplantation.  Having a deep sense of gratitude for my Gift of Life, I consider it my part to give back and benefit the lives of others.  Volunteering as an ambassador is one of the ways I thank and honor my donor and donor family and support the message of Donate Life, saving lives through organ and tissue donation.”

2. Why do you find being an ambassador important?

“Any and all opportunities to thank my donor and to increase organ, eye and tissue donation are important.  The need for healthy organs is great and quantity is few. Perhaps the greatest benefit is the reason we all do it in the first place; it makes a difference. As a recipient, I find value in that people can ‘see’ a healthy active person, alive and standing before them ONLY through the generosity of an organ donor, usually a complete stranger, and by the grace of God. It’s reassuring to see, proof positive, that you can make a difference.”

3. What do you enjoy about volunteering?

“First, sharing the message of Donate Life and sharing my journey, hoping that others might realize the difference they can make through organ, eye and tissue donation.  Second, meeting and interacting with the people.  Not only reaching out to motivate others, but meeting fellow recipients with whom I enjoy teaming up with to volunteer, the donor family members, and professionals I have met in the field of transplantation.  I have not only gained new friendships but a wealth of knowledge in the process.”

4. Why would you encourage others to become LifeQuest ambassadors?

“Volunteering as a LIfeQuest Ambassador is a powerful way to make a difference, help others, and in this case, save lives. Simply put, as an ambassador you impact not only your life but the lives of those you volunteer with and those whose lives benefit from your efforts.”

5. Why do you encourage others to register as organ donors?

“Organ donation saves and enhances lives.  It has the pebble dropped in a brook effect, the ripples radiate far. Donation is not just about what it can do for an individual but for a family and the community.  It is a humanitarian effort, an act of kindness, and the last best gift a person can give.”

Read more about Katie below.

Silent Celebration

They say a picture is worth a thousand words. The same can be said of a Donate Life flag waving in the wind. This silent visual illustrates a bold yet heartfelt statement about the legacy of an organ donor and the significance of sharing the Gift of Life.

The Donate Life flag at Capital Regional Medical Center.

Raising the Donate Life flag is just one way LifeQuest recognizes our donor families for their generosity and sacrifice. The flag is prominent at private memorials, Honor Walks and public celebrations, too. It represents our continuing effort to raise awareness about organ, eye and tissue donation.

Donate Life flags serve as a symbol of unity, trust, and hope, while honoring those touched by donation and transplantation. The flag celebrates the hundreds of thousands of donors and recipients whose lives have been impacted.

Nearly 109,000 Americans — more than 5,000 of them in Florida — are on the transplant waiting list for life-saving organs. There were 40,000 organ transplants performed in the United States in 2019.

Donor families share a special reverence of the Donate Life flag and the ideals it represents. Its simple design features the national Donate Life logo. This call to action is highlighted in blue and green, representative of the sky and earth, and it includes a swirl signifying the circle of life.

Here the flag symbolizes donor education at Leon County EMS.

If you have ever driven by a local hospital and seen the Donate Life flag on their flagpole, you probably wondered what it means. Our dedicated hospital partners and their staff are essential participants in honoring those who say ‘yes’ to organ donation.

Many partnering hospitals fly a Donate Life flag each time a donation occurs at one of their centers. The flag may fly for a day, sometimes for a week, revealing to the community and hospital staff that someone has just shared life, the greatest gift of all.  After the flag has been flown, some hospitals present it to the donor family to keep. It is a meaningful reminder of the service and sacrifice needed to make the Gift of Life possible.

In addition to flying the Donate Life flag after a donation occurs, some hospitals and transplant centers, as well as recovery agencies, fly the Donate Life flag during National Donate Life Month in April. It is an easy way to start the conversation about donation and increase visibility of the life-saving power one person can have by registering with the Florida organ donor registry.

A Silent Celebration at Fort Walton Beach Medical Center.

Some hospitals partner with LifeQuest to host annual flag-raising ceremonies. Donor families, friends and members of the community are invited to attend. A hospital’s chaplain or a faith leader may share words of encouragement. Staff from the hospital and from LifeQuest, and donor family members and recipients also are invited to say a few words to honor the legacy of donors and the strength of donor families. The ceremonies offer families comfort and the opportunity to visit with healthcare teams who cared for their loved ones during the donation process.

At Ascension Sacred Heart Pensacola, a folded flag is placed in the hands of the donor’s next-of-kin.

The Donate Life flag is also prominent during the Honor Walk, a reverent ritual designed to show respect for patients at the end of life who are donating organs to others. The donor’s hospital bed is sometimes blanketed with a Donate Life flag on its final journey from the intensive care unit (ICU) to the operating room (OR). The flag is folded and then placed in the hands of the donor’s next-of-kin. The cherished item can be passed down to children and grandchildren. A Donate Life flag may also be provided to drape the casket or accompany the urn of a deceased donor.

Transplants give hope to people with organ failure and improve the lives of countless patients. LifeQuest covers 36 counties in northern Florida, from Jacksonville to the east, to Ocala in the south, to Pensacola in the west.  The donation service area supports more than four million people and consists of more than 70 partner hospitals.

LifeQuest appreciates our partner hospitals for joining in our flag program, which serves as a final tribute to an individual life the family has lost. Organ donation would not be possible without their help.