Our patients' stories

Surgery for Cleft Lip and Palate: Dan’s Story
As an adopted toddler, Dan came from China to CHOP, where for the next 18 years the multidisciplinary cleft palate team provided peak care, including multiple surgeries.
Sara's Story: Surgery to Treat Epilepsy
Sara lived with seizures until age 9. Her family flew 7,000 miles from United Arab Emirates so she could undergo epilepsy surgery at Children’s Hospital of Philadelphia. Every day since, Sara has told her mom how happy she is to have had the procedure.

MELAS Syndrome: Gina’s and Her Family’s Story
CHOP provides the answer to 26-year mitochondrial disease mystery to parents grateful for closure in their daughter’s death.

Congenital Hyperinsulinism: Isaac’s and Levi’s Story
When a rare disorder was diagnosed in two of their children, the Linares family found hope and expertise at CHOP.

Congenital Hyperinsulinism: Dominique’s story
Endocrinologists in New York didn’t have the knowledge of hyperinsulinism to help Dominique, 30, so she came to CHOP for treatment that controlled her HI.

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.