Our patients' stories

Brian’s Story: Getting Back to Sports – Safely
With help from CHOP’s new Sports Cardiology Clinic, Brian doesn't just manage his heart condition – he can take control of it.

Natalie’s Story: Novel Treatment of Aicardi Goutieres Syndrome
Natalie could walk, talk, and was ahead of all milestones for her age. Then, when she was 18 months old, her parents, Nicole and Patrick, noticed her lifting her big toes off the ground when she walked, as though she had a splinter or cut on the bottom of her foot.

Three Generations Under CHOP’s Care for HI
Grandfather, mom and granddaughter have all been treated at CHOP for congenital hyperinsulinism (HI). This family’s history shows the evolution of HI care.

Following Her Heart: Marissa's Story
Marissa was born with congenital heart defects. Now, she’s an Adult Congenital Heart Center patient and a CHOP Cardiac Care nurse, helping kids like herself.

Playing with Heart: Meghan’s Journey
When a soccer star learns she has a heart condition, CHOP’s Sports Cardiology Clinic gets her back to the sport she loves.

Precision Medicine for Infantile Fibrosarcoma: Levy’s Story
Levy traveled from Brazil and participated in a clinical trial for an oral drug that targeted a specific genetic change in his tumor.

Second Opinion Reveals Thyroid Cancer: Zoey’s Story
New Jersey girl thriving following thyroidectomy; family credits CHOP for her “amazing” comeback.

Brandon’s Story: Ketogenic Diet Cures Myoclonic Atonic Epilepsy
Read about Brandon's journey from dangerously uncontrollable seizures to seizure-freedom for the past 10 years.

Anxiety and ADHD: Molly’s Story
Molly faced problems with focus and worrying before the pandemic heightened her feelings. Behavioral Health clinicians at CHOP helped her get back on track.

Limb-length discrepancy: Lukas’ story
Lukas is pain free and playing tennis after CHOP doctors performed two innovative limb-lengthening procedures.

Experimental Gene Therapy for Hemophilia B: Jay’s Story
For 50-plus years, Jay dealt with the frequent treatments needed for his hemophilia. A gene therapy put an end to the treatments and to the worry the disease caused him.
Patrick’s Story: Intravenous Immunoglobulin to Treat MOGAD
For Eileen and Brenden, March 14, 2020, is not only memorable because it was the day the United States declared a National Emergency due to the COVID-19 outbreak. It was also the day their son, Patrick, suffered a concussion that led to a potentially life-changing diagnosis.

A Legacy of Love: Cela’s Story
CHOP’s palliative care team supports a family through the tragic passing of their beloved daughter.

Given’s Story: Prenatal Care and Postnatal Surgery for Sacrococcygeal Teratoma
When Given’s parents learned their unborn baby had a sacrococcygeal teratoma (SCT), a tumor on the tailbone, they sought help and hope at CHOP.

Brachial Plexus Injury: Cai Li’s Story
After an international adoption, family turns to CHOP for support, surgery and therapy for son with brachial plexus injury.

Heart Transplant: Jayden's Story
Vomiting and swollen legs led to a shocking diagnosis: Jayden’s heart was failing. A heart transplant at CHOP has transformed his life.

Early Diagnosis and Treatment for X-Linked Hypophosphatemia: Eliana’s Story
Eliana inherited a rare condition affecting bone development from her mother. Both mother and daughter receive treatment at CHOP from a doctor with special expertise in the condition.

Alexander’s Story: Advancing Research and Care for Autosomal Dominant Polycystic Kidney Disease
When Carolyn was 28 weeks pregnant with her third child and her doctor in New York discovered that her baby carried the gene for autosomal dominant polycystic kidney disease (ADPKD), she became dedicated to changing the historical lack of pediatric research on the rare disease.

Experimental Gene Therapy for Hemophilia B: Bill’s Story
For nearly 50 years, Bill needed frequent treatment for hemophilia — often every few days. A gene therapy changed everything.

Congenital Hyperinsulinism: Eliza’s Story
Eliza’s family brought her to CHOP for its expertise in hyperinsulinism. She became the 600th patient to have pancreas surgery and went home cured.