Our patients' stories

Eli’s Story: A Dad Reflects on His Son’s CCAM Diagnosis
Before Eli was born, he was diagnosed with a congenital cystic adenomatoid malformation (CCAM), a large mass in his left lung. Eli’s dad, Matt, shares the story of his family’s journey to CHOP.

NLRC-4 Mutation: Olivia’s Story
Jill DiStefano shares her family’s story of heartbreak and hope when they learned daughter Olivia had a rare genetic mutation of NLRC-4 — one that only a few children in the world have. Thankfully, a team of CHOP specialists were able to unlock the mystery about how best to care for this little girl.

Kisha Hortman Hawthorne, PhD, FACHE
Paul’s Road to Recovery after Hemorrhagic Stroke
Years of rehabilitation therapy at CHOP’s Seashore House combined with his parents' dedication to his education have fueled Paul’s progress since suffering a hemorrhagic stroke.

Adapting After Stroke: Bryan’s Story
Bryan has come a long way since he was in a wheelchair and unable to speak after suffering a stroke. Learn how Bryan and his family are adapting along the road to recovery.

Multiple Sclerosis: Allison’s Story
Since being diagnosed with multiple sclerosis (MS) at age 14, Allison has remained determined not to let the disease define her.

Biliary Atresia and Liver Transplant: Mya's Story
When Mya was an infant, her parents, Lissa and Jeff, learned she had biliary atresia and would eventually need a liver transplant. Here, Lissa shares the story of her daughter’s journey to a transplant at CHOP.

Genetic Predisposition to Cardiomyopathy: The Moran Family’s Story
It all started when Joy told her mom, Heather, that she was having chest pains. Heather’s family history of hypertrophic cardiomyopathy prompted her to schedule an appointment at the Cardiac Center, where both Joy and her sister, Ryann, were found to have the gene for cardiomyopathy
Very Early Onset IBD: Jacob's Story
Jacob's family took him to different doctors, looking for help for their very sick baby. They finally found answers, and life-changing treatment, at Children's Hospital of Philadelphia.

Relapsed Leukemia: Tori's Story
Tori had been diagnosed with acute lymphoblastic leukemia (ALL), the most common childhood cancer, as a kindergartner. Since then, she’d relapsed twice.

Kidney Stones: Alina’s Story
After Alina was diagnosed with kidney stones, her family found answers at The Children’s Hospital of Philadelphia’s dedicated Pediatric Kidney Stone Center.

The Long Journey to Finding a Treatment that Works: Dante's Story
I told them CHOP was the best place for Dante to go … When I need their expertise, they’re there.

Fetal Surgery for Pericardial Teratoma: Tucker’s Story
After undergoing fetal surgery at CHOP for a pericardial teratoma, Tucker became the first baby to survive having a tumor removed from his heart before birth.

Type 1 Diabetes: Asher's Story
When Asher was diagnosed with diabetes at the age of 3 and a half, his family had a lot to learn about the disease and how to control it. But six months later, Asher was using an insulin pump and his diabetes was under control.

Sacrococcygeal Teratoma (SCT): Ava's Story
Despite insurance obstacles, a family found hope at the Center for Fetal Diagnosis and Treatment after learning their baby had a sacrococcygeal teratoma (SCT).

Marfan Syndrome: Rebecca's Story
Rebecca, 19, has Marfan syndrome, a genetic disorder that causes cardiac complications. When she was 3 years old, she was referred to pediatric cardiologist Marie Gleason, MD, at Children’s Hospital of Philadelphia — and she’s been coming to the Hospital ever since.

Heart Arrhythmia: Joseph's Story
When Joseph Duran was 4 years old he was diagnosed with a heart arrhythmia. He's now routinely monitored by team members at CHOP's Electrophysiology and Heart Rhythm Program — and is thriving thanks to their care.

Twin-twin Transfusion Syndrome (TTTS): Aiden and Dillon
After Aiden and Dillon were prenatally diagnosed with twin-twin transfusion syndrome (TTTS), Rachel underwent a fetal surgery procedure to halt the progression of the condition.

Twin-twin Transfusion Syndrome (TTTS): Luke and Landon’s Story
Luke and Landon were diagnosed with twin-twin transfusion syndrome before birth. Things got more complicated when the family learned that Luke also had a heart defect called tetralogy of Fallot and a lung lesion.

Spina Bifida: Ciarlo’s Story
Ciarlo was diagnosed before birth with spina bifida and had surgery at Children’s Hospital of Philadelphia the day after he was born. Today, he’s followed by the Spina Bifida Program.

Fetal Surgery for Sacrococcygeal Teratoma (SCT): Maeve’s Story
Before Maeve was born, doctors at Children’s Hospital of Philadelphia performed fetal surgery to remove a huge tumor growing from her tailbone called a sacrococcygeal teratoma (SCT).