Patient Stories

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.

Xiomara was born extremely preterm, with severely underdeveloped lungs. Despite nine months in intensive care, her health did not improve. Then, her care was transferred to Children’s Hospital of Philadelphia, where the Newborn/Infant Chronic Lung Disease Program “saved her life and gave her a chance at a normal childhood,” says her mom.

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.

Daniel’s leukemia came back five times. Since receiving an experimental treatment at CHOP called CAR T-cell therapy, he’s been cancer-free.

Because of a rare liver condition, Rory potentially faced life-threatening liver failure. A liver transplant at CHOP changed everything.

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.

Learning that their child has a brain condition was a traumatic experience for Samia and Andre.