Patient Stories

Genetic sequencing revealed that Rafi had an extremely rare, often fatal disease — and the discovery was amazingly made before he had serious symptoms.

Rohan, 13, isn’t sure what path he wants to take in the future — athlete, engineer, architect, analytics or maybe some creative pursuit — but what he does know is that he’ll be successful because of the guidance he’s received from Jenelle Nissley-Tsiopinis, PhD, a psychologist in Center for the Management of ADHD at Children’s Hospital of Philadelphia.

Born with a rare condition affecting her bone marrow, 2-year-old Elizabeth has large care teams at CHOP and her local hospital who coordinate to keep her growing and happy.

Devon underwent surgery, chemotherapy and proton therapy for a brain tumor the size of a softball. Within months, she started college and made the Dean’s List.

Lucy was born with small lungs and critical breathing challenges. The care she received at CHOP prepared her to go home with minimal breathing support.

CHOP provides the answer to 26-year mitochondrial disease mystery to parents grateful for closure in their daughter’s death.

When a rare disorder was diagnosed in two of their children, the Linares family found hope and expertise at CHOP.

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.

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.