Our patients' stories

Pulmonary Interstitial Glycogenosis: June’s Story
From Day 1, June was breathing too rapidly. The Rare Lung Diseases Center diagnosed her condition: pulmonary interstitial glycogenosis. June was lucky; her mild case resolved on its own.

Beckwith-Wiedemann Syndrome and Pancreatoblastoma: Kaitlyn’s Story
Kaitlyn, 12, has remained positive through multiple surgeries for the symptoms of a rare genetic disorder and treatment for an associated cancer.

Rumination Syndrome: Alicia’s Story
Teen makes full recovery from rumination syndrome, thanks to CHOP’s guidance and her positive attitude.

Hemispherotomy Brain Surgery to Treat Epilepsy: Colton’s Story
Thanks to the support of his adoptive parents and the relentless commitment of his care team at Children’s Hospital of Philadelphia, 5-year-old Colton has come a long way since suffering traumatic brain injury as a newborn.

Gastroparesis: Catherine’s Story
After years of mysterious GI symptoms, Catherine now has a diagnosis, successful treatment and has started a burgeoning new career as a chef.

Hemispherotomy Surgery to Treat Seizures: Matthew’s Story
Matthew has been through a lot in his young life. Thankfully, between his adoptive parents and his medical team at CHOP, he’s got a great support team in his corner.

Surgical repair of bladder exstrophy: Layden’s story
An experienced multi-institutional surgical team provides an extra level of care for kids like Layden born with bladder exstrophy.

Severe Asthma: Onni’s Story
With her severe asthma under control — with help from CHOP’s PAPA Clinic — Onni is in school, out of the hospital and “a whole new kid.”

Learning to Grieve: Joseph “Joey” Nolan’s Story
Support from CHOP’s palliative care and bereavement specialists helped Joey’s family through the heartbreaking experience of losing a child and brother.

New Onset Nephrotic Syndrome: Nolan’s Story
3 year old Nolan’s leg pain and swelling of his eyes and stomach led to a diagnosis of nephrotic syndrome, now managed by immunosuppression.

Medical Management of Rett Syndrome: Clare’s Story
The knowledge and support they have received from their care team at CHOP has helped Clare’s parents manage her progressive neurodevelopmental disorder.

Kidney Transplant for Prune Belly Syndrome: Jaxon’s Story
Five-year-old Jaxon is playing soccer and baseball for the first time after a successful kidney transplant surgery on Christmas Day 2020.

Heart Defect and Down Syndrome: Anthony’s Long Road Home
Born with a heart defect and Down syndrome, Anthony needed immediate treatment for his cardiac issue before his developmental condition could be addressed.

A Game-changer for Kidney Stones: Chloe’s Story
Innovative care for Chloe’s kidney stones is closer than ever at CHOP’s new hospital in King of Prussia.

A Pediatric E.R. That’s Easier to Reach When Mysterious Symptoms Arise
Evan’s fevers and arm pain required emergency evaluation. With CHOP’s new KOP hospital now open, families like his can reach a E.R. much faster.

Prenatal Diagnosis of Hydrocephalus and Postnatal Shunt Surgery: Laurel’s Story
When Laurel was diagnosed with hydrocephalus while she was still in the womb, her parents turned to the best team to give their daughter the best chance in life.

Neurofibromatosis Type 1: Conor’s story
Conor, 16, and his parents have been traveling to CHOP from South Carolina several times a year since he was an infant for NF1 treatment and clinical trials.

Neurofibromatosis 1: Carlee’s Story
Carlee, 4, receives treatment for the optic pathway tumor that caused vision loss. But she’s also gotten extensive psycho-social support.

Voice Loss and Acid Reflux: Kate’s Story
Kate loves to sing. In a scare when she was 16, she experienced bouts of losing her voice. The Pediatric Voice Program at CHOP helped her get her voice, and her dreams, back.

Acute Lymphoblastic Leukemia: Sloane’s Story
A rash that appeared as a few tiny purple spots on Sloane’s arms and legs signaled to her parents, Lyndsay and Jon, that something might be wrong, even though the little girl was not showing signs of being sick in any way.