Our patients' stories

Kearns-Sayre syndrome: Omar's Story
After a decade, doctors finally provide answers and treatment for a child with a rare syndrome.

Fetal surgery during a pandemic: Reagan's story
Not many people can say they underwent fetal surgery during a pandemic, but Jasmin did it to give her daughter a better chance at a healthy life.

Bela’s Story: Robot-assisted Ureteroureterostomy for Duplex Kidney
Treatment for duplex kidney and ureterocele spanned from before birth to a robotic surgery.

Maverick’s Spina Bifida Story
Specialists from CHOP’s Spina Bifida Clinic met Maverick and his family before he was even born and have supported them along their journey ever since.

B-cell Lymphoblastic Lymphoma and CAR-T Therapy: Lexi’s Story
Lexi’s cancer journey has been rough, including a relapse and vision loss, but her spirit remains strong.

Twin Reversed Arterial Perfusion Sequence: Inés’ Story
Inés’ family credits an expert care team and seamless communication across the miles for saving their daughter’s life.

The Value of Family Screening in Celiac Disease: CJ and Bella’s Story
When CJ's slow growth prompted his parents to ask his pediatric for help, they had no idea it would result in not just CJ – but also his dad and sister – being diagnosed with celiac disease.

Congenital Hyperinsulinism and Beckwith-Wiedemann Syndrome: Alina’s Story
The partnership between her doctors at The Congenital Hyperinsulinism Center at CHOP and her local medical team in California is keeping Alina healthy and allowing her to be a typical toddler. However, her beginning was anything but typical.

Mitochondrial Disease: Ignacio's Story
Ignacio has been a healthy and active kid since he received a liver transplant at CHOP when he was two months old, part of his treatment for a rare form of mitochondrial disease.

Food Allergies: Grace's Story
Plagued with food allergies for years, 12-year-old Grace can now eat almost anything thanks to a breakthrough oral immunotherapy program at CHOP.

Nearly Too Late: A Family Learns the Dangers of Delaying Care during COVID-19
Fear of COVID-19 kept Marco's family away from seeking medical care, and their son was gravely ill when they got to CHOP.

Pihu’s Story: Surgery for Ruptured Appendix in the Height of the COVID-19 Pandemic
A delay in care due to concerns over COVID-19 exposure put Pihu at risk for serious complications from a burst appendix. Once at Children’s Hospital of Philadelphia, the family was comforted by the hospital’s safety precautions and the team’s competence and compassion.
Breath of Hope: COVID-19 Breathalyzer Testing in Development
Research ingenuity — and a little help from four-legged friends — promise breakthroughs in testing for COVID-19.

Autism, Seizure Disorder and NJTACC: Kyle's Story
CHOP’s NJTACC helps families find practitioners with an understanding of how to provide effective care for teens with special needs.

CHARGE Syndrome, Autism and NJTACC: Cesar’s Story
Cesar, who has multiple medical conditions, found the help he needed at CHOP’s NJTACC.

Jaxson’s Story: Using Telemedicine to Reach Children With Rare Genetic Epilepsies
Telehealth has allowed Jaxson, 3, and his family to stay connected with the Epilepsy Neurogenetics Initiative (ENGIN) from the comfort of their home during the COVID-19 pandemic.
Pajama Day Spotlight: Groveland Elementary School
For the students and staff at Groveland Elementary School in Doylestown, Pa., participating in Children’s Hospital of Philadelphia’s annual Pajama Day fundraiser every year is not only a chance to be extra cozy at school, it’s also an opportunity to support a cause near and dear to their hearts.

Life After Neuroblastoma: Ruby's Story
After twice overcoming cancer as a young child, Ruby is thriving in college, playing wheelchair basketball and planning for her future.

Tetralogy of Fallot: Casey’s Story
An innovative new heart valve and expert treatment at CHOP have given 18-year-old Casey a new lease on life.

Endocrine Late Effects After Cancer Treatment: Kai’s Story
Kai’s thyroid cancer is one of the long-term side effects of the cancer treatment he underwent as a toddler.