Our patients' stories

An Augmentative and Alternative Communication System Helps His Personality Shine Through: Justin’s Story
CHOP speech-language pathologists help Justin find the augmentative and alternative communication system that’s right for him, right now.

Beckwith-Wiedemann Syndrome: Alivya’s Story
Alivya traveled to CHOP from her home in Indiana to receive treatment for Beckwith-Wiedemann syndrome. Today, she’s home — and smiling.

Eosinophilic Esophagitis: Sam's Story
A novel clinical study at CHOP has made 8-year-old Sam asymptomatic for eosinophilic esophagitis after he was diagnosed as a baby.

Turner Syndrome Second Opinion: Carlin’s Story
Carlin, 12, has Turner syndrome. She has been receiving comprehensive care and a network for support and training at Children’s Hospital of Philadelphia.

Congenital Diaphragmatic Hernia: Gage’s Story
Born with CDH, Gage made a full recovery after surgery at CHOP. To help others, his family is participating in research about long-term outcomes for CDH.

Nephrotic Syndrome: Denim’s Story
After being treated for nephrotic syndrome, Denim has turned the challenges of managing a chronic kidney disease into an opportunity to help others.

Hypoplastic Left Heart Syndrome and Heart Transplant: Hudson's Story
Born with heart disease and later developing heart failure, Hudson needed a heart transplant. Today, the 5-year-old is running circles around his parents.

Epidermolysis Bullosa: Wilbert’s Story
Wilbert sees a multidisciplinary team at CHOP for treatment of epidermolysis bullosa (EB), a rare genetic skin disease that causes painful blistering.

Giant Cell Myocarditis: Jackson’s Story
Two years ago, Jackson was on life support after being diagnosed with a rare, life-threatening heart disorder. Now 15, he’s an active teen looking forward to the future.

Tetralogy of Fallot and Discontinuous Pulmonary Arteries: Zane's Story
More than 20 years after open heart surgery, Zane is attending medical school to help other children with congenital heart defects.

Partial Anomalous Pulmonary Venous Return: Nadia’s Story
Open heart surgery helped Nadia thrive. She gained 4 pounds and a ton of energy. Her mom's biggest concern was that her daughter was doing too much post-surgery.

Tetralogy of Fallot: Cooper's Story
Two-year-old Cooper had overcome open heart surgery, angioplasty and more, but he wasn't talking much and that concerned his parents.

Expert Care, from Birth through Adulthood: Erin’s Story
To 22-year-old Erin, her numerous scars are powerful reminders of all she's overcome since being diagnosed with congenital heart disease as a baby.

Never-Before-Seen Disease: Elijah’s story
In unlocking the key to Elijah’s mystery illness, CHOP doctors identified a new autoimmune disease and developed a customized plan to treat his disorder.

Gastroschisis in a Twin Pregnancy: Chelsea’s Story
Read about 2-year-old Chelsea’s journey from prenatal diagnosis of gastroschisis, to surgery, recovery in the N/IICU, and clean bill of health.

Timing and Teamwork for Hepatoblastoma Therapy: Harry’s Story
Harry was diagnosed with hepatoblastoma in his home country of Panama and traveled to CHOP for a life-saving treatment.

An Augmentative and Alternative Communication System: Dino’s Story
Leigh syndrome took away Dino’s speech, but not his voice. With CHOP’s help, he found the perfect AAC device and now “speaks” easily with family, professors and friends.

B-cell Acute Lymphoblastic Leukemia (ALL): Keira’s Story
A year and a half following her B-cell acute lymphoblastic leukemia diagnosis, Keira, 9, is singing, dancing and playing sports.

Hodgkin’s Lymphoma: Kayla’s Story
Kayla’s experience with cancer treatment is influencing her future choices — she wants to become a child life specialist.

Rhabdomyosarcoma: Kaitlyn’s Story
Kaitlyn lights up the room with her smile and emanates positivity, despite her battle with rhabdomyosarcoma.