Our patients' stories

Leigh Syndrome/EARS2: Davis’ Story
Davis’ initial mitochondrial disease outlook was grim, but a refined diagnosis at CHOP led to treatment that put him on a path with a bright future.

Diego’s Story: Medical Management of Epilepsy Seizures and Transition to Adult Care
Diego had his first seizure in sixth grade. It began with a sudden, unusual sensation (known as an aura). The next thing he knew, he was in an ambulance.

CAR T-Cell Therapy for Relapsed ALL: Johnny’s Story
After multiple rounds of chemotherapy couldn’t wipe out Johnny’s cancer, he came to CHOP and received two versions of CAR T-cell therapy.

Xiomara’s Story: Long-Term Care for Chronic Lung Disease
Xiomara was born extremely preterm, with severely underdeveloped lungs. She was transferred to CHOP, where the Newborn/Infant Chronic Lung Disease Program “saved her life and gave her a chance at a normal childhood,” says her mom.

Surgery for Osteochondritis Dissecans Knee Injury: Ian’s Story
Ian, 13, is back shooting hoops after successful osteochondritis dissecans knee surgery at Children’s Hospital of Philadelphia.

Hyperinsulinism/Hyperammonemia: Daniel’s Story
Much has been learned about hyperinsulinism/hyperammonemia since Daniel first had severe low blood sugar as a baby. A new clinic as CHOP can help improve symptoms.
Helping Families Through Perinatal and Postpartum Loss: Ellie's Story
At CHOP, an experienced team guides families through immeasurable loss. Here, parents Emily and Justin share their thoughts on the support that mattered most during a heartbreaking experience.

CAR T-Cell Therapy for Relapsed ALL: Daniel’s Story
Daniel’s leukemia came back five times. Since receiving an experimental treatment at CHOP called CAR T-cell therapy, he’s been cancer-free.

Alagille Syndrome and Liver Transplant: Rory’s Story
Because of a rare liver condition, Rory potentially faced life-threatening liver failure. A liver transplant at CHOP changed everything.

Born with Tetralogy of Fallot, Now a Marathon Runner: Julia’s Story
As a baby, Julia had heart surgery at CHOP. When her doctors encouraged her to lead an active life, she took up running. Now she’s a marathoner.

Hassani’s Story: Hemispherotomy to Control Seizures from Hemimegalencephaly
Learning that their child has a brain condition was a traumatic experience for Samia and Andre.

Katie Grace’s Story: Whole Genome Sequencing to Diagnose Leukodystrophy
Katie Grace’s balance and mobility issues were a mystery until a neurologic issue was identified as the cause. Whole genome sequencing through a clinical trial led by CHOP’s Leukodystrophy Center provided a clear diagnosis and a plan forward.

Beckwith-Wiedemann Spectrum: Chelsea's Story
CHOP provided the elusive diagnosis of Beckwith-Wiedemann, so Chelsea is getting the care she needs.

CHOP’s 300th Heart Transplant Patient: Gabo’s Story
After suffering a sudden cardiac arrest, Gabo needed a heart transplant. A year later, this active 9-year-old is participating in his favorite activities again, including hiking, skateboarding and ballet.

Postnatal Surgery for Congenital Cystic Adenomatoid Malformation: Emma’s Story
Emma, now 25, was born with a life-threatening birth defect. Her family’s experience at CHOP early on in her life have inspired her to pursue a career in science.

Lambdoid Craniosynostosis: Nora’s Story
Nora had the least common type of fused skull seam. Her CHOP surgeon had all the tools in his toolbox for the many surgical ways to treat it.

ACL surgery at the Middleman Family Pavilion: Liam’s story
When 12-year-old Liam tore his ACL playing basketball, his family found the best-in-nation orthopedic care he needed, conveniently close to home.

Critical Care and Resuscitation Science Center/Academy for Resuscitation of Children: Emma’s Story
Emma’s heart stopped beating for 11 minutes, but personalized resuscitation and highly skill care brought her back to life. Now she’s fully recovered and thriving.

Medulloblastoma and Integrative Oncology: Kellan’s Story
During Kellan’s treatment for an aggressive brain cancer, he was having a session with CHOP yoga therapist Tonia Kulp, MS, C-IAYT. She explained what a mantra was, and how he could use one in tough times to center himself. Kellan picked a card that said: Today I choose happiness.

PICU Experience at the Middleman Family Pavilion: Louie’s Story
After a recent surgery to repair a fractured leg, Louie was transferred to the Middleman Family Pavilion in King of Prussia to recover, which is much closer to the family’s home.