Our patients' stories
Alagille Syndrome and Liver Transplant: Rory’s Story
Because of a rare liver condition, Rory potentially faced life-threatening liver failure. A liver transplant at CHOP changed everything.
Born with Tetralogy of Fallot, Now a Marathon Runner: Julia’s Story
As a baby, Julia had heart surgery at CHOP. When her doctors encouraged her to lead an active life, she took up running. Now she’s a marathoner.
Hassani’s Story: Hemispherotomy to Control Seizures from Hemimegalencephaly
Learning that their child has a brain condition was a traumatic experience for Samia and Andre.
Katie Grace’s Story: Whole Genome Sequencing to Diagnose Leukodystrophy
Katie Grace’s balance and mobility issues were a mystery until a neurologic issue was identified as the cause. Whole genome sequencing through a clinical trial led by CHOP’s Leukodystrophy Center provided a clear diagnosis and a plan forward.
Beckwith-Wiedemann Spectrum: Chelsea's Story
CHOP provided the elusive diagnosis of Beckwith-Wiedemann, so Chelsea is getting the care she needs.
Connective Tissue Clinic Therapy for Hypermobile Ehlers-Danlos Syndrome: Andrew, Alexa and Spencer’s Story
Three siblings have a disorder that allows their joints extend beyond the normal range. Specialized physical and occupational therapy at CHOP helps them stay active without harming themselves.
CHOP’s 300th Heart Transplant Patient: Gabo’s Story
After suffering a sudden cardiac arrest, Gabo needed a heart transplant. A year later, this active 9-year-old is participating in his favorite activities again, including hiking, skateboarding and ballet.
Postnatal Surgery for Congenital Cystic Adenomatoid Malformation: Emma’s Story
Emma, now 25, was born with a life-threatening birth defect. Her family’s experience at CHOP early on in her life have inspired her to pursue a career in science.
Lambdoid Craniosynostosis: Nora’s Story
Nora had the least common type of fused skull seam. Her CHOP surgeon had all the tools in his toolbox for the many surgical ways to treat it.
ACL surgery at the Middleman Family Pavilion: Liam’s story
When 12-year-old Liam tore his ACL playing basketball, his family found the best-in-nation orthopedic care he needed, conveniently close to home.
Critical Care and Resuscitation Science Center/Academy for Resuscitation of Children: Emma’s Story
Emma’s heart stopped beating for 11 minutes, but personalized resuscitation and highly skill care brought her back to life. Now she’s fully recovered and thriving.
Medulloblastoma and Integrative Oncology: Kellan’s Story
During Kellan’s treatment for an aggressive brain cancer, he was having a session with CHOP yoga therapist Tonia Kulp, MS, C-IAYT. She explained what a mantra was, and how he could use one in tough times to center himself. Kellan picked a card that said: Today I choose happiness.
PICU Experience at the Middleman Family Pavilion: Louie’s Story
After a recent surgery to repair a fractured leg, Louie was transferred to the Middleman Family Pavilion in King of Prussia to recover, which is much closer to the family’s home.
ENT Surgery at the Middleman Family Pavilion: Carter’s Story
After multiple failed hearing tests, 6-month-old Carter needed ear tube surgery. His family found the expert ENT care they needed conveniently close to home.
Coming Back After Concussion: Max’s Story
Teen makes full recovery after concussion, thanks to supportive care and innovative approach at CHOP.
Trisomy 21: Bryant’s Story
A year into the COVID-19 pandemic, Bryant’s family received a wake-up call from the staff at the Trisomy 21 Program. Instead of steadily improving since his last visit, Bryant’s behavior had become troublesome, he’d gained a significant amount of weight and his blood work was concerning.
Desmoid Tumor: Vaida’s Story
Vaida’s tumor is in her cheek, a rare location for a desmoid tumor. After surgery at CHOP, this 2-year-old has retained an impressive amount of facial muscle function.
Esofagitis eosinofílica: La historia de Princess
Hace años que Princess lucha contra una enfermedad inflamatoria del esófago poco frecuente. Gracias a CHOP, un nuevo medicamento y el apoyo de su familia, ahora está mejorando.
EDEM3-CDG: Austin, Savannah and Lily’s story
Mysterious symptoms in one family’s three children leads to identification at CHOP of a new form of congenital disorder of glycosylation (CDG).
Autism, Language Disorder, and Augmentative and Alternative Communication: Julian’s Story
Because Julian is nonspeaking, he needed communication device — and the patient coaching from a speech-language pathologist — to open up his world.