Patient Stories

At just 5 years old, Valerie began experiencing fatigue, bloating, and a significant drop in endurance. After extensive testing, doctors discovered she was in heart failure due to a rare and severe form of restrictive cardiomyopathy. The only cure was a heart transplant, but her heart and lung pressures were too high to proceed safely.

Valerie’s family sought a second opinion at Nemours Children’s Hospital, Delaware, where Dr. Christian Pizarro and Dr. Devyani Chowdhury offered renewed hope. With expert care, Valerie underwent a successful VAD (ventricular assist device) surgery to lower her pressures, followed by a heart transplant. She endured multiple challenges, including two strokes, but overcame them all with strength, faith, and the exceptional care at Nemours.

Read more about Valerie's story here.

Joshua, now 6, was diagnosed with SMA Type 1 before birth, leading to severe muscle weakness and neuromuscular scoliosis. For over four years, he wore a back brace around the clock and frequently faced life-threatening respiratory issues.

A referral to Nemours Children’s Hospital, Florida, changed everything. Orthopedic specialists, led by Dr. Lovejoy, recommended halo traction and rod placement surgery. After 58 days in the hospital, Joshua came home transformed, no longer in a brace, breathing easier, and avoiding hospital stays even during illness.

Thanks to the expert, compassionate care at Nemours, Joshua’s quality of life has improved dramatically. While more surgeries lie ahead, his family is confident in the team that has treated him like their own. As his grandmother Claudia says, “I would not hesitate to do it all over again.”

Read more of Joshua's story here.

“Mom, I love all the different people we meet here.” And she truly does. She talks to everyone, asking the physical therapists and nurses if they got the Wordle today, she laughs at the animated stories the PCTs tell her, she shares with the occupational therapists where she’s at in the Harry Potter series, talks with Peds Academy interns about her favorite novels written in verse, plays Dear Evan Hansen on the keyboard while music therapy sings along, and explodes with laughter with the childlife therapist as they assess the mess they’ve made with syringe painting turned finger painting. Her eight week stay here has been incredibly hard work, post selective dorsal rhizotomy surgery followed by intensive inpatient rehab, but through her eyes it had been pure delight.  

Ines is fourteen years old and has cerebral palsy and uses a wheelchair. She is the first born triplet and one of eight siblings, so she is no stranger to being around people and having a busy schedule. And being here, everyone has truly treated her as part of the Nemours family. Not only did the doctors cheer her on as she made strides post operatively and gained strength, but as she made progress on her complicated round puzzle. E

Everyday Ines greets everyone with her amazing smile. She loves to show everyone her artwork lining the windows. Her paperchains each bear a positive word written on each link about her highlights here. These words include, “view”, “sunsets”,  “movies”, “vegan chicken tenders”, and “garden”. Hardly words that describe a recovery from a T1-S1 spine incision. But Nemours goes above and beyond to heal the whole child, with exceptional medical care combined with the amenities of home. Our journey is far from over, but as she is discharged at the end of this week, we are well equipped and supported to continue her journey. 

Children in the hospital face hard and scary things, but Nemours steps up to ease those fears and provide comfort. As Ines rolls down the hallway, waving to her unit neighbors as they enjoy her light up wheels, the smiles on the kids’ faces stand out the most.

“It’s cancer.” These words changed Luke’s life forever when he was diagnosed with Acute Myeloid Leukemia on August 22, 2023.

In spring 2023, Luke became increasingly tired and struggled with everyday activities. By summer, he had unusual bruises and a persistent ear infection. Luke’s mom Judith knew her son seemed unwell. “A simple walk from the car to the front door became almost impossible,” she says.

When school started in August, Luke’s condition worsened. He struggled to get out of bed and complained of severe headaches and stomachaches. In her heart, Judith knew something was not right, but doctors continued to assure her that “he was just a normal growing boy.”

It was a call from the school nurse at Luke’s school and Luke’s weary voice telling his mom, “Momma, I can’t take this anymore,” that Judith knew she had to rush him to the hospital. Blood tests revealed alarming results. Luke’s family quickly had to make some choices about Luke’s care. He was transferred two hours away to Nemours — which would become their second home.

At Nemours, the diagnosis of leukemia was confirmed. Luke underwent four rounds of chemo, multiple procedures, an ICU trip, and a stay on a ventilator. Through it all, Judith says the dedicated Nemours medical team was behind them all the way. “They were always there to celebrate our milestones, no matter how little or big they were,” she says.

They became like family, and “everyone knew the silly, handsome, cool kid in room 4103.”

By Christmas of 2023, Luke’s condition improved, and in January 2024 — after 150 days at Nemours — he achieved remission. Finally, Luke and his family were able to return home.