Our patients' stories
Leo Fought Like a Lion to Beat Stage 5 Kidney Cancer
Two hospitals work together to care for a 3-year-old with cancer and his family.
Weston’s Story: Management of 4H Leukodystrophy
It took many doctor visits and diagnostic tests before a genetic test came back positive for leukodystrophy when Weston was 3 years old.
Seaton’s Story: Venous Thoracic Outlet Syndrome
A blood clot discovered at a local hospital brought Seaton to Children's Hospital of Philadelphia where he was diagnosed with venous thoracic outlet syndrome and underwent successful rib resection surgery to get back on the court.
Osteomyelitis: Shlomo’s Story
Shlomo was diagnosed with osteomyelitis, a rare bone infection, after complaining of pain in his ankle. CHOP got him back on his feet after over a year without walking.
Hugh’s Story
Hugh was diagnosed with congenital diaphragmatic hernia (CDH) in utero. His parents traveled to the Center for Fetal Diagnosis and Treatment at Children’s Hospital of Philadelphia (CHOP), which has treated more CDH cases than any hospital in the world. Hugh is now a healthy 10-year-old who proudly claims Philly as his hometown, and the Eagles as his favorite team.
Gene Therapy for Sickle Cell Disease: Segun’s Story
An FDA-approved gene therapy eliminates acute pain episodes for people with sickle cell disease and transforms their life expectancy.
Treating Bladder Dysfunction With Minimally Invasive Nerve Stimulation: Viviana’s Story
CHOP’s Urology Department treats a teen with approved technique that stimulates a nerve in the foot to restore bladder function.
Khymir’s Story: Gene Therapy to Treat Cerebral Adrenoleukodystrophy
Khymir is a 4-year-old boy who was found to have adrenoleukodystrophy (ALD) through Pennsylvania’s newborn screening.
Gene Therapy for Duchenne Muscular Dystrophy: Cash’s Story
Children’s Hospital of Philadelphia now offers the first-ever gene therapy treatment for Duchenne Muscular Dystrophy (DMD) to patients like 6-year-old Cash. This breakthrough treatment slows the progression of symptoms and can improve strength and endurance for patients with DMD.
Diagnosing Kagami-Ogata syndrome (KOS): Luna’s Story
Kagami-Ogata syndrome (KOS) is so rare that some hospitals have never even heard of it. But CHOP was dedicated to getting a diagnosis.
Gene Therapy for Sickle Cell Disease: Marie-Chantal’s Story
An FDA-approved gene therapy is giving people with sickle cell disease a future they didn’t think they’d have.
Giving Through Gratitude: Gigi’s Story
The Hess family nearly lost their daughter to a deadly virus. Since then, they’ve given back by partnering with CHOP to help foster kids.
Broc’s Story: High-intensity Focused Ultrasound to Treat Seizures
Broc was 7 years old when he had his first tonic-clonic seizure (also known as a grand mal). He lost consciousness and had violent muscle contractions. It was extremely frightening for his parents, Heather and Dave, to see.
Repeated Concussions: Liam’s Story
After a youth athlete sustains repeated concussions, CHOP’s Minds Matter Concussion Program encourages him to change sports to regain control of his future.
Nance Horan Syndrome: Chaz’s Story
Chaz was only two months old when his family learned he was nearly blind. Family history provided a clue to a rare genetic disorder called Nance Horan syndrome.
Rhys’s Story: Routine Well Visit Leads to Diagnosis of Wilms Tumor
CHOP Primary Care pediatricians and specialists collaborated to diagnose and treat a cancerous tumor before 6-month-old Rhys had any symptoms and the tumor spread.
GCK Hyperinsulinism: Nico’s Story
Being part of a clinical trial as a patient of the HI Center research gave Nico the independence to be a normal kid and still safely manage his hyperinsulinism.
Compound Fracture: Anthony’s Story
After an e-scooter accident left Anthony with a broken ankle and serious wounds, a CHOP Orthopedic Trauma Surgeon stepped in to help.
Hypospadias: Ali’s Story
Ali and his family traveled from Dubai to Thailand to Washington, D.C., to Philadelphia, where they finally found confidence and comfort in their care team and the surgical approach.
Stephanos’ Story
Stephanos was diagnosed with a congenital heart defect in utero and had three surgeries before he turned 3. Thanks to the Fetal Heart Program at Children’s Hospital of Philadelphia, Stephanos is now a 6-year-old who loves Legos and sports, and swings a mean golf club.