Irie Gellis survived months of intubation, four open-heart surgeries, 19 chest tubes, eight catheterization procedures and countless IVs

NEED TO KNOW

• A Florida toddler who spent 333 days in the hospital is now thriving after a heart transplant
• Irie Gellis survived a rare heart defect, months of intensive in-patient procedures and a near-fatal infection
• Now 2, Irie “loves KPop Demon Hunters, singing and dancing in the living room, petting every dog she meets, and climbing the tallest ladders at the playground,” said her mom, Olivia

A toddler who spent 333 days in the hospital is now thriving in a life her family once feared would never be possible.

When Irie Gellis was born on Sept. 11, 2023, her parents, Olivia and Albert Gellis, believed she was perfectly healthy.

"She arrived during a perfectly uncomplicated homebirth," Olivia, 36, tells PEOPLE exclusively. "She looked healthy and peaceful, and we thought we were beginning an ordinary life."

However, less than 24 hours later, Olivia — who is a doula — says her instincts told her something wasn't right.

"My mother's intuition told me something was wrong. We brought her to the emergency room expecting reassurance and a quick discharge,” says the Florida-based mom of two. "Instead, it was the beginning of a 333-day hospital stay."

Doctors diagnosed Irie with hypoplastic left heart syndrome (HLHS), a rare congenital heart defect, and airlifted her to the nearest children's hospital. 

"Doctors told us that our only options were hospice or transferring to another center willing to take on her complex case and give her a heart transplant," Olivia says.

UF Health Shands in Gainesville, Fla., was the only hospital willing to accept Irie's case.

"We said yes immediately and followed our daughter there," Olivia says.

Over the next year, the Gellis family rebuilt their lives around a hospital room.

They relocated three and a half hours from home so they could stay together while remaining close to Irie's care. Olivia and Albert never left their daughter alone overnight, taking turns sleeping in her room while caring for Irie's older sister, Faith, and keeping their small business afloat.

During her hospitalization, Irie became the first pediatric patient in Florida to receive a Berlin Heart EXCOR as a bridge to heart transplant while the device was still being studied as part of the FDA approval process.

"We knew there were risks, but we also knew that if it worked for Irie, it could open doors for children who came after her," Olivia says. "And it did."

She adds that many children in Florida have since been able to receive the device.

She says that simple moments became milestones.

"The first time we were able to hold her was three months into our hospital stay and it took five medical staff to assist," Olivia says.

Then, on Irie's 6-month birthday, the family received the phone call they had been desperately waiting for.

"It's impossible to explain the emotions of that moment," Olivia says. "We were overwhelmed with gratitude and hope, but also heartbroken for the family whose loss made our miracle possible. One family's worst day became our daughter's second chance at life."

Irie received her donor heart on March 12, 2024.

But just one week later, she developed aspergillus, a severe fungal infection.

"We were told she was entering territory no pediatric heart transplant recipient had survived before," Olivia says. "There were moments when hope felt impossibly fragile, but our medical team never stopped fighting for her, and neither did Irie."

Against overwhelming odds, Irie survived months of intensive treatment, including four months of intubation, four open-heart surgeries, 19 chest tubes, eight catheterization procedures, countless IVs and hours on high-flow oxygen.

Finally, on Aug. 12, 2024, the family walked out of the hospital together.

"Exactly 11 months after we first carried her into the emergency room, we finally carried her back out," Olivia says. "Walking out of the hospital was the happiest moment of our lives, but it also changed us forever."

Watching other families struggle with housing, food, childcare and the challenges of living far from home while their children received medical care inspired the couple to launch The Heartful Voyage, a nonprofit that provides hospital families with free housing, practical support and access to community resources.

"Sometimes the most meaningful thing you can give a family is the ability to stay close to their child," Olivia says.

Now, Irie is 2 years old, and her mom says her life looks remarkably different.

"Life after transplant is surprisingly ordinary," Olivia says. "We take medications twice a day and spend more time doing bloodwork than most families ever will, but mostly, we live."

She describes Irie as "the happiest child I know."

"She loves KPop Demon Hunters, singing and dancing in the living room, petting every dog she meets, and climbing the tallest ladders at the playground. She wakes up excited for each day."

The family is also preparing for another milestone.

On June 19, Irie became the youngest participant in the 2026 National Transplant Games in Denver. The entire family also participated in the 5K that morning.

Olivia says the family learned about the Games last year and immediately added them to their bucket list.

The trip will also mark the family's first major vacation since Irie was born.

To get there, the Gellis family embarked on a cross-country RV journey from Gainesville to Denver, made possible through a partnership with Outdoorsy, which covered the family's RV rental.

"At Outdoorsy, we've always believed that the open road has a way of healing and connecting us, and that every family deserves the freedom to make memories together," Jen Young, co-founder of Outdoorsy, tells PEOPLE.

"After hearing about Irie and everything her family went through, we knew we could make an impact, and helping get her to the Transplant Games felt like the least we could do,” she added.

Olivia, who posts about her family's journey on Instagram under the handle @theheartfulvoyage, went on to tell PEOPLE that she hopes her family's experience encourages others facing similar challenges, as well as people considering organ donation.

"My goal in sharing our story is to show how beautiful life after transplant can be," Olivia says. 

Never miss a story — sign up for PEOPLE's free daily newsletter to stay up-to-date on the best of what PEOPLE has to offer​​, from celebrity news to compelling human interest stories.

"Not because the hard parts disappear, but because joy eventually finds its way back in. And I want people to know that organ donation makes all of it possible. The best way we know to honor the gift of organ donation is to live life fully,” she adds.

Source link