July 2024

In 2019, Kevin Jacques wanted his proposal to his then-girlfriend Amanda Meyer to be a surprise and thought a spot 1,500 miles away would be less likely to give away his plans.

He decided on Acadia National Park near Bar Harbor, Maine. His family owns a lake house nearby, and a summer vacation was just the cover he needed.

Kevin, Amanda and his then-7-year-old daughter, Allison, went on a horse-drawn carriage ride through the park, and when they stopped to take a closer look at a historical cobblestone bridge, Amanda was surprised to discover the path beneath it lined with pink rose pedals and hearts drawn in the sand.

“I was so sure it was meant for someone else,” Amanda said. Then she spotted someone hiding in the bushes with a camera to capture the moment.

“I turned around, and Kevin was on one knee. I said, ‘Shut up.’ I thought he was joking,” she said.

Amanda said yes.

 

 

 

 

 

 

 

The romantic proposal was very different than how the Tallahassee couple’s love story began two years earlier in the summer of 2017, when they met on a dating app and discovered they lived less than a mile apart.

“On our first date, Kevin showed me his scar from his liver resection and told me he had an autoimmune disease,” Amanda said. “As the saying goes, it’s either a great experience or a great story.”

Kevin, who was learning to live with primary sclerosing cholangitis or PSC, was up front with Amanda about his chronic liver disease. He told her that he would eventually need a liver transplant, but it would likely be years down the road.

“Like in his mid-forties,” Amanda said.

A few weeks after the couple started dating, Kevin’s condition worsened. At first, Amanda did not completely understand what Kevin was going through, but she began to see firsthand how it affected his day-to-day life.

“As we were dating, he was becoming more tired, and his eyes started turning yellow,” Amanda said. “Kevin’s very honest about everything, so he’s doing lab work and telling me what the scores mean. They kept going up, up, up, which meant he might need a liver transplant sooner rather than later.”

By Christmas of 2017, Kevin and Amanda’s affection for each other was obvious – so was his declining health. They spent more time visiting doctors than going on dates. Neither of them knew what to expect, only that they were in love.

“We were both adults with careers at this point.  It wasn’t a silly fling, and we both knew that,” Amanda said.   She taught second-graders at Canopy Oaks Elementary School at the time, and Kevin worked at a recycling plant.

In March of 2018, their devotion was tested when Kevin was suddenly diagnosed with liver failure. So alarming were the results of his blood tests done at a local hospital that Kevin was taken by ambulance to UF Health Shands Hospital. Amanda made the two-hour trip from Tallahassee to Gainesville with him.

“Of course, Amanda and I had no clue what was to come. We honestly thought they would get my labs looking better and send me on my way,” Kevin said.  “The next morning, I was told I would be there until I get a transplant.”

Kevin needed a liver transplant to survive, and he needed it right away.

“I was definitely on death’s door,” Kevin recalled.

On March 18, 2018, Kevin was gifted a new liver at UF Health Shands Hospital. He was 28 years old.

By then, Kevin and Amanda were in love.

“I never thought about not staying around. It just never seemed like an option that I was willing to entertain,” she said. “Even when Kevin was told to go to Shands because he was being admitted, I was like, ‘OK, I’ll go home and pack my bag.’”

Kevin’s life had been in a state of limbo for some time. Now with a liver transplant behind him and Amanda by his side, hope began to reshape his imagination.

“I had a feeling Amanda was the one shortly after we met. She was there after the transplant, no questions asked. That kind of solidified it for me,” Kevin said. “She always showed that she cared about me and was supportive of my decisions about everything.”

On the day Kevin was discharged from the hospital, Amanda asked him, “My house or your mom’s?”

It was the moment of truth.

“He said, ‘I’m going to Amanda’s.’  It was unconventional, but it made sense,” she said.

Amanda lived with her elderly grandmother at the time, so she could help care for her. Now there would be three of them – Kevin, Amanda and her grandmother – sharing the home together.

Not your typical roommates.

“I think Amanda’s just as crazy as I am, so it works out,” Kevin said, lightheartedly.

Amanda acknowledged she was a bit nervous about Kevin moving in at first. An organ transplant is major surgery and caregivers play a crucial role.

“The tipping point was when we were at the hospital, and they talked about what care would be like when he went home,” Amanda said. “Are there dogs? Are there cats? Are there stairs?”

For Kevin, there was never a doubt.

“My stay at Shands was great,” Kevin said. “One thing that we were really impressed with is how much time they spent with Amanda to make sure she was ready to take on the role of caretaker.”

Ultimately, the decision to move in together brought Kevin and Amanda closer together. They will celebrate their four-year wedding anniversary on November 21, 2024.

Thanks to a heroic organ donor the Jacques family is now a party of five with the arrival of Lucie Luveina, 1, and Clint, 2. Kevin’s daughter, Allison, is now 13 years old. The family recently settled into a larger home of their own.

“I always wanted more than just one kid. I came from a big family,” Kevin said. “I really didn’t expect that our life would be where it is now. I would never have thought that I’d be here.”

Amanda agreed, wholeheartedly.

“It’s way better than what I thought it would be like all those years ago,” she said. “It’s kind of crazy we are where we are, in this home with these beautiful children. I think we are very blessed, and we know it.”

To accommodate their life together, Kevin and Amanda changed jobs. Amanda works as an ATAC swim coach, so she can spend more time with the kids. Kevin found balance and happiness working at the City of Tallahassee’s Sam ‘O Purdom Generating station in St. Marks, Fla., where he is surrounded by a community of caring co-workers.

To show their support during National Donate Life Month in April, the plant’s employees decorated their offices, set up a table, hosted a luncheon, flew a Donate Life flag, and lit up in blue and green for the annual Let Your Light Shine Campaign. They also raised a $750 contribution to LifeQuest and entered the Donate Life America National Blue and Green Day Photo Contest – and won!

Their support means everything to Kevin and Amanda, both of whom share about organ donation at high schools, hospitals and community events.

“I’m proud of it. If I can work it into a conversation, I try to,” Kevin said. He would like to meet his donor family someday.

“I don’t know anything about my donor,” Kevin said.  “I have written multiple letters, along with letters from Amanda, Allison, my mom, and siblings.  We are so grateful for my donor, and we wish we could tell them just how grateful we are.”

(By Kim Gilmore, Sr. Public Education Coordinator)

April 2024

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.”

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.

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.

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.

 

 

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.

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.

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.

“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)

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.

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!”

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.”

August 2023

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

“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 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.

“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.”

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 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)

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.

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.

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.

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.’”

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.”

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)

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 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.”

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.

“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

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.

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.

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.

“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.

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.

November 2021:

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.

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.

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.

“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.

“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 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.

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.”

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.

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.”

 

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.

“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.”

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.

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.

“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.