Our patients' stories

Lymphatic Microsurgery: Daniel’s Story
Diagnosed with a rare lymphatic condition called chylothorax, a newborn undergoes life-saving surgery at CHOP’s Center for Lymphatic Disorders.

Duchenne Muscular Dystrophy: Cooper’s Story
Cooper was one of the first at CHOP to receive a new FDA-approved infusion therapy for Duchenne muscular dystrophy, which is given to him at home. Results are promising.

A Game-Changer for When a Fever Can Be Life-Threatening
Whenever a cancer patient like Max gets a fever, it’s an emergency. CHOP’s new hospital in King of Prussia will mean a closer ER for these frightening moments.

Overcoming Feeding Issues from Congenital Diaphragmatic Hernia: Maggie’s Story
Born with a hole in her diaphragm (congenital diaphragmatic hernia), feeding difficulties were one of the biggest hurdles little Maggie has had to face in her CDH journey.

Hypogammaglobulinemia: Dylan’s Story
Looking for bright spot during COVID-19? Look no further than 7-year-old Dylan, an active 2nd grader who’s had his first infection-free year in his entire life.

Ewing Sarcoma and Growth Hormone Deficiency: Vanessa’s Story
A tumor in the bones around her eye robbed Vanessa of her vision in one eye, but she showed strength and resilience dealing with treatment and long-term side effects.

Bone Marrow Transplant for Sickle Cell Disease: Asher’s Story
For years, sickle cell disease caused frequent pain crises and hospitalizations for Asher. A curative therapy has eliminated those harrowing experiences.

Bone Marrow Transplant for Sickle Cell Disease: Dallas’ Story
Sickle cell disease brings constant fear of life-threatening complications. A successful bone marrow transplant ended those fears for Dallas and her family.

ACL reconstruction and meniscus repair: Dean’s story
When Dean tore his ACL and meniscus in a soccer game, CHOP’s Sports Medicine team expertly repaired the damage so he could return to the sport he loves.

Bone Marrow Transplant to Treat Hurler Syndrome: Josie’s Story
18-month-old Josie received a stem cell transplant to stop a rare and devastating genetic condition in its tracks.

Experimental Gene Therapy for Beta Thalassemia: Aliya’s Story
For the first 30 years of her life, Aliya needed monthly blood transfusions for her inherited blood disorder. A gene therapy changed everything.

Creation of Potts Shunt on ECMO: Elias’ Story
When two-year-old Elias was placed on ECMO with severe pulmonary hypertension, his chances of survival were almost nonexistent. CHOP cardiothoracic surgeon Dr. Maeda saved his life through a risky procedure called Potts Shunt.

Spinal fusion during COVID-19: Shane’s story
When Shane’s spinal curve dramatically worsened, his CHOP orthopedic team knew it was time to act. Then COVID-19 happened. Follow his spine surgery journey.

Bilateral Nephrectomies for Wilms Tumors: Raritan’s Story
With cancerous tumors in both kidneys, Raritan’s care team from Oncology, Urology and Radiation collaborated to successfully remove them through a specialized surgical technique.

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.