Irie Gellis’ fight brought her family to Gainesville, where UF Health Shands saved her life and inspired her parents to create a charity supporting other families.
Thousands of people erupted in cheers and a standing ovation for 2.5-year-old toddler Irie Gellis.
As her dad, Albert, carried her with her 4-year-old sister, Faith, close behind, the trio sprinted toward center stage in a Denver auditorium.
Her mom, Olivia, in the spur of the moment, opted to film as Irie was presented with a bittersweet honor that marks an unlikely journey for her and her family.
The celebration — much less the moment — was never planned.
A small trophy that now sits on top of a shelf over her parents’ dinner table, just a month later, serves as a reminder for their child’s journey — one that included more time in hospitals than most people experience in a lifetime, and defied several grim dances with death.
Life-changing day
Olivia nor Albert could have imagined hearing the sounds of a helicopter on the day of Irie’s birth would eventually lead to them calling Gainesville home.
Neither of them was even in the room when their daughter was diagnosed with hypoplastic left heart syndrome.
“We got our diagnosis over FaceTime,” Albert said. “(The doctor) hardly introduced himself. He spoke very fast, and he said, ‘Your daughter is going to need three open heart surgeries in the first three to five years of her life.’
“I literally fell on the floor.”
Oddly, the day featured Irie having to live up to the meaning of her name.
Irie’s name is a nod to Albert’s nanny, who helped raise him. The meaning of his daughter’s name translates to “everything good” or “everything will be alright.”
That history is why Albert and Olivia intentionally built careers that allowed them to be present for their children.
“We had a live-in sitter from Jamaica,” Albert said. “My youngest brother ended up calling her mom. My mom was dealing with her mother dying when my brother was young, and she was gone.
“I know it hurt her a lot being the person who is not the primary caretaker of their kid. Me working in restaurants, anyone that I wanted to be like always told me that they didn’t know their kids. They were paying strangers to raise them, so we decided that (we weren’t doing that).”
Unknowingly, the commitment to being a dad, along with a career background as well as a unique name, all culminated on Sept. 11, 2023 — the day Irie was born in their original home of Sarasota.
The Gellis’ second daughter had an uncomplicated home birth, but shortly after, Olivia had a sense that something wasn’t right.
“I would say the first day of her life, I kind of realized that something was wrong,” Olivia said. “I would say within 30 minutes of us entering Sarasota Memorial Hospital emergency room, she was diagnosed.
“All the things started happening. Paralyzed, incubated and within 45 minutes we heard a helicopter.”
It was the beginning of an ordeal that led to Irie spending nearly a year in the hospital.
“We were shell-shocked,” Olivia said. “We weren’t allowed to go on the helicopter…It was a high-risk flight.
“They said that if we didn’t bring her into the hospital that night, she would have died overnight.”
After being taken to a hospital in St. Petersburg, the Gellis’ called hospitals around the country hoping that any cardiologist would give their ill-fated child a chance.
“Boston, Texas, L.A., basically everyone said no,” Olivia said. “They weren’t willing to risk it because they didn’t think she would survive.”
The only hospital willing to try was UF Health Shands — and soon the family unexpectedly began to call Gainesville home.
“Not promising you anything,” Olivia recalled from Dr. Mark Bleiweis. “But this is what we do.”
“He was the only one who said yes.”
More brushes with death
The Gellis family took an uneasy gamble with the Berlin EXCOR Active, an extracorporeal ventricular assist device designed to serve as a bridge to a heart transplant.
The device is not FDA-approved for children, but Irie became the first pediatric patient at Shands to receive it. Her successful outcome not only sustained her until a transplant became available but also helped pave the way for the device’s use in other children.
“It’s not FDA approved for children at the time,” Olivia said. “They asked us if we wanted to be the first pediatric patient on it. He had asked other families in the past, but they said no because it was not FDA-approved. It was too scary.
“We felt like even if it doesn’t necessarily save her life, it could help another child in the future.”
Then six months later, the family received news that a heart was available. The Gellis’ don’t know the history of the heart’s donor, but have sent an anonymous letter through the transplant coordinator.
The Gellis’ have yet to receive a response from the donor’s family.
Even after receiving a successful heart transplant in March of 2024, Irie faced another battle as she developed aspergillosis, which is a severe fungal infection.
“It’s something nobody in the world has survived at her age,” Olivia said. “She’s the only child post-transplant who has survived this fungus. She was sicker after that than she was going into the transplant.”
But Irie somehow survived.
“Aspergillosis is in the air all around us,” Albert said. “And it happened to land on her sternum during the open heart surgery while she’s got no immune system. Somehow, she’s fighting a fungus with no immune system, not going into rejection with that immune system getting the new heart.
“Every single doctor said the good Lord has plans for her because there’s no other explanation.”
After the infection, Irie spent five more months in the hospital.
By the time Irie left the hospital, she had experienced four open-heart surgeries, eight catheterization procedures, 19 chest tubes and four months of intubation.
“The cardiac team in Shands is world-class,” Olivia said. “They don’t get enough credit. The miracles they pull off in that unit are incredible.
“She was the longest patient to be on the unit post-transplant and leave alive.”
Heartful Voyage
A bowl of potato soup became the inspiration for what would eventually become the Gellis’ charity, Heartful Voyage.
The first night after Irie was airlifted to St. Petersburg, Albert sat at the kitchen table battling with the feelings of despair as the couple spent the night and coming months at the Ronald McDonald House.
“The very first night we were there, we were out of our minds with grief and stress,” Olivia said. “We were at the worst. The manager of the Ronald McDonald House, she made Al potato soup in the kitchen post midnight.”
The act of kindness stayed with Olivia and Albert as they airlifted again to Gainesville. During Irie’s time in the hospital, the couple realized the biggest struggles often had nothing to do with medicine.
“We learned what families needed, how families were already being supported in Gainesville, and what was lacking,” Olivia said. “The Ronald McDonald houses do what they do very well, but there’s a big opening with what families need that they are not able to help with.
“The medical team is wonderful. They’re focusing on the child. I had literally just given birth, and nobody cared. Nobody asks how you are doing. There are social workers, but they are spread thin.”
Their experience exposed what they felt was a gap in support for families navigating these difficulties. Olivia and Albert developed the idea to start their own version called Heartful Voyage, which is designed to be a local network in providing care for cardiac families at UF Shands. Unlike the Ronald McDonald House, it is not limited to children, and so far they have helped over 30 families.
The Gellis’ charity first began by paying for hotel rooms. Then it gradually transitioned to getting apartments and now placing families in housing. As of now, the Gellis’ have two homes that the charity uses.
Another reason for the creation of Heartful Voyage is the process required to be allowed to have a transplant, specifically how a hospital requires proof of housing, which entails having a clean home and being within a certain distance from the hospital.
“There’s a lot that goes into the minute parts of life that we don’t have to think about when we’re out of the hospital,” Olivia said. “When you’re in the hospital, every single thing is difficult to do.
“Our goal is to support the cardiac families at UF Shands in a holistic way. Housing is important, but we go beyond that. We would like to expand on helping with food, organic local food from restaurants, grocery stores, gardens around Gainesville to be donated, laundry services, even sibling care.”
The Transplant Games
Irie’s ordeal often left the family struggling to survive and isolated due to the lack of community.
The Transplant Games changed that.
They met donor families and transplant recipients decades removed from surgery. Albert happened to discover the event by luck on social media this spring.
The games celebrate recipients of life-saving organ, tissue, or bone transplants and, at the same time, celebrate the success of their lives while promoting organ donation and awareness.
Participants range from young children to even the elderly, beginning back in 1978 in England and brought to the United States in 1990. This became the family’s first vacation together, which was planned and sponsored by Outdoorsy, allowing them to rent an RV and make a cross-country road trip.
Irie competed in the games’ Youth Olympics which included an obstacle course, archery, hula-hoop and soccer.
“We got to meet donor families,” Olivia said. “We got to meet families who lost their loved one decades ago and were still coming to these games in memory of them because being a donor family was such an identity to them.”
Irie instantly became one of the most recognized faces at the event as she was the youngest participant, and even met the oldest, who was 93 years old.
“She got to meet, play, and sit in the lap of the oldest transplant recipient,” Albert said. “It was her first time going to the games without her husband. She said meeting Irie was the highlight of her weekend.
“For the first time we felt like we were not alone. She’s not alone. She never will be alone.”
By the closing ceremony, Irie was unexpectedly acknowledged, and now the Gellis’ intend to travel to Belgium next year for the 2027 World Transplant Games, hoping to put together a team that represents Florida.
So when Irie’s name was called, thousands couldn’t help but rise to their feet.
“It was life-changing,” Olivia said. “She got her youngest competitor award.
“They called her name, and we were shocked. She got a standing ovation from thousands of people. She was a little inspiration to other people.”
Reach Florida Gators writer Andrew Abadie at AAbadie@usatodayco.com or on X (formerly Twitter) at @AndrewAbadie. You can also find him on Facebook at Andrew Abadie Sports Reporter or on Instagram @andrewabadie_sports.
