Our patients' stories
Insulinoma: Leilani’s story
When doctors in Florida struggled to diagnose Leilani’s rare illness, her parents pushed to bring her to Children’s Hospital of Philadelphia, where she was cured.
Bone Marrow Transplant for Hurler Syndrome: Ethan’s Story
Diagnosed before his first birthday with a rare disease that causes ongoing damage to cells and organs, Ethan quickly received the only treatment that prevents further disease.
Bilateral Vocal Cord Paralysis and Airway Reconstruction: Maxwell’s Story
Paralyzed vocal cords required a trach that kept Maxwell out of the water. Surgery at CHOP allowed him to dive in the waves.
Kabuki Syndrome: Rosalie's Story
Rosalie had been in and out of the hospital a few times at three months old before coming to the Kabuki Syndrome Clinic at CHOP for answers.
Lexi’s Story: Specialized Clinical Care for Beta-Propeller Protein-Associated Neurodegeneration (BPAN)
Genetic testing determined that Lexi had a very rare genetic disorder known as beta-propeller protein-associated neurodegeneration (BPAN).
Thoracic insufficiency and Jeune syndrome: Bubba’s story
When Bubba was born with serious health issues, his family turned to CHOP for life-saving treatment from Jeune syndrome and thoracic insufficiency syndrome.
Philadelphia-positive Acute Lymphoblastic Leukemia and Pancreatic Pseudocyst: Colin’s Story
Teams from CHOP oncology, CHOP GI and Penn Medicine partnered to treat Colin’s high-risk leukemia and pancreas complications rarely seen in children.
From Hawaii to Philadelphia During COVID-19: Eva’s Story
In the midst of the pandemic, a family travels from Hawaii to Philadelphia for their daughter’s third open-heart surgery. Find out why.
Kellyann’s story: Posterior spinal fusion surgery for scoliosis
When Kellyann was 14, she had an intense growth spurt, growing four inches taller. As a result, her scoliosis progressed suddenly to a 65-degree curve in her spine.
Coming Back After Concussion: Nolan’s Story
When concussion foiled Nolan’s hockey aspirations, he re-focused on baseball and is now living his dream in the Major Leagues.
An ER That’s Nearby Will Mean Getting Answers Faster
For parents of children like Dandelion with chronic conditions, an ER in KOP will significantly reduce stress.
Lily’s Story: Congenital Diaphragmatic Hernia Repair
After receiving a prenatal diagnosis of CDH, Laura and Nick turned to the expertise of CHOP’s fetal team.
Heart Transplant: Makai’s Story
A diagnosis of heart failure stunned Makai and his family. After a heart transplant and many dire health emergencies, he’s back to being an energetic teen.
Casting to Treat Scoliosis and Foot Deformities: Paisley’s Story
Paisley’s foot and spine deformities were identified early, allowing CHOP clinicians to use braces and casts to fix her condition, instead of surgical correction.
New hospital will simplify families’ lives when kids need multiple surgeries
Between them, siblings Emmalyn and Carson have needed surgical procedures involving the feet, hands, and jaw, all of which will be offered at CHOP’s King of Prussia hospital.
Growing up with spina bifida: Valerie’s story
Valerie, now 20 and pursuing a career in video game design, has been followed by CHOP’s Spina Bifida Program for most of her life.
Hyperinsulinism and Turner Syndrome: Aliza’s Story
It was only after Aliza’s parents brought her to CHOP that she received expert care for her two diagnoses: Turner syndrome and hyperinsulinism.
Multicentric Castleman Disease, PRES and Immune Dysregulation: Joey's Story
Small, flu-like symptoms quickly worsened for 13-year-old Joey, causing his organs to fail and his family to desperately search for help with his rare disease.
Systemic Juvenile Idiopathic Arthritis: GP’s Story
When GP arrived at CHOP, he was one of the sickest systemic arthritis patients his rheumatologist had even seen. Today, GP is home and enjoying kindergarten.
‘KOP Makes My Day More Predictable’: Alex’s Family’s Story
With a rare genetic syndrome, 15-month-old Alex is followed by multiple specialists. When the appointments are at King of Prussia, his mother feels relief and certainty.