Our patients' stories
Evan’s Story: Deep Brain Stimulation to Treat Complex Movement Disorders
There was no “book” Ellen could refer to for medical guidance on her son, Evan, who has a rare genetic mutation.
X-linked Lymphoproliferative Disease 1: Rafi’s Story
Genetic sequencing revealed that Rafi had an extremely rare, often fatal disease — and the discovery was amazingly made before he had serious symptoms.
Achilles tendon rupture and repair: Zoe’s story
After CHOP successfully treated Zoe’s ruptured Achilles tendon, the 17-year-old is headed to college on a full athletic scholarship.
Attention Deficit-Hyperactivity Disorder: Rohan’s Story
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.
Shwachman-Diamond Syndrome: Elizabeth’s Story
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.
Brain Tumor: Devon’s Story
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.
Success with Less-invasive Treatment for Pulmonary Hypoplasia: Lucy’s Story
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.
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.