Our patients' stories

CDKL5 Deficiency Disorder: Avery's Story
Avery, 6, has been treated at Children’s Hospital of Philadelphia (CHOP) for seizures since she was a baby. She is one of the first patients to benefit from CHOP’s new multidisciplinary CDKL5 Clinic.

Chronic Lung Disease and Necrotizing Enterocolitis: Dylan’s Story
Born prematurely, Dylan Vazquez, 3, overcame daunting health challenges and is thriving today thanks to the care he received at Children’s Hospital of Philadelphia.

Lucy’s Story: Going All In to Cure a Rare Disease
Genetic testing helped Lucy's family identify a potential treatment for her seizures, which enabled her family and the ENGIN team to tackle her rare disease.

Heart Transplant: Tenlee's Story
Tenlee was 3 days old when her family learned reconstructive surgery wouldn't be enough to save her life — she needed a new heart.

Patent Ductus Arteriosus: Zylah’s Story
Before Zylah was even born, she received a miraculous birthday gift. It wasn’t a frilly dress or a pretty doll, but a heart procedure developed for extremely premature babies, just like her.

Morgan’s story: Bilateral hip surgery
When Morgan was 11, longstanding hip issues began to severely limit her mobility and ability to play her favorite sport, soccer. Here, she describes the experience in her own words.

Dilated Cardiomyopathy and Heart Transplant: Angy-Mike’s Story
When seemingly healthy Angy-Mike was diagnosed with cardiac disease, his family was shocked. A new heart got this high school wrestler back on the mat.

Giant Omphalocele: Emma’s Story
After a long journey to overcome giant omphalocele, a life-threatening birth defect, Emma is thriving.

Celiac Disease: Weston’s Story
Learn how the Center for Celiac Disease at Children’s Hospital of Philadelphia helped this family change their diets and get their son well.

Beta Thalassemia Major: Mia’s Story
From the time she was just a few months old, Mia needed blood transfusions due to her rare blood disease. A bone marrow transplant changed everything.

Emma’s Story: Bracing for Scoliosis
A case of pneumonia led to the discovery that Emma had scoliosis. Diligence in adhering to her bracing treatment plan produced an amazing outcome.

Donor Profile: The EVAN Foundation
In the face of limited funding, the Lindbergs are fiercely determined to support pediatric neuroblastoma research.

Donor Profile: The Magical Mila Foundation
Mila didn’t survive surgery for complications of her rare genetic disease, which also caused extremely high blood pressure. Her parents are determined to find new options.
Best Way to Treat Amblyopia? Follow Doctor’s Orders: Jayden’s Story
When a CHOP optometrist and a child’s family work together, it’s possible to correct lazy eye, even with a late diagnosis. Education and compliance are key.

Hypoplastic Left Heart Syndrome and Kidney Transplant: Owen’s Story
As an infant, Owen needed three open-heart surgeries. As a teen, he needed a new kidney — which his mother donated.

Holt-Oram Syndrome and Hand Reconstruction: Wade’s Story
From turning a book’s pages to carrying a baseball bat, Wade’s ability to negotiate the world has expanded thanks to his new thumbs.

From Central America to Philadelphia for Fetal Surgery for Spina Bifida: Eva’s Story
Eva’s parents came to CHOP from Central America so she could have fetal surgery for spina bifida with the world’s most experienced team.

Dilated Cardiomyopathy: Cherish’s Story
Cherish’s rare and extremely serious heart condition went undiagnosed for years. CHOP experts gave Cherish and her family, at first, hope, and then a new heart.

Endocrine Late Effects After Cancer Treatment: Raine’s Story
Treatment for childhood leukemia has had several long-term effects on Raine’s health, but this successful college graduate is pursuing her dream.

Kian’s Story: Preparing the Whole Family for Fetal Surgery for Myelomeningocele
Kian’s parents credit Children’s Hospital of Philadelphia for going above and beyond to support their entire family during their fetal surgery experience.