Our patients' stories

Elke’s Story: Myelin Oligodendrocyte Glycoprotein Antibody Disease
At age 10, Elke was afflicted by MOGAD, a serious illness that started with acute and severe paralysis and an inability to speak.

Transposition of the Great Arteries: Mazan’s Story
When their son is born with a complex congenital heart defect, a Lehigh Valley family turns to CHOP for care.

A Lifesaving Call: Ellis’ Journey with Single Ventricle Heart Disease
A routine video visit with CHOP’s innovative Single Ventricle Monitoring Program leads to lifesaving care for a newborn with heart disease.

Alexandria’s Story: Burr Hole Hemispherotomy for Seizures Caused By Perinatal Stroke
Alexandria was born at Pennsylvania Hospital, the nation’s first hospital, located in downtown Philadelphia. Everything seemed fine just after her C-section delivery, but within 24 hours of her birth, her mother, Kacy, noticed Alexandria’s eye twitching. She pointed it out to a nurse who brought in a neonatologist to evaluate the newborn. The neonatologist said the twitch was, in fact, a seizure.

Synovial Sarcoma: Callan’s Story
Many oncology programs declared Callan’s rare tumor, located in his chest, inoperable. CHOP offered a comprehensive treatment plan that successfully removed the tumor.

Klinefelter Syndrome: Yuji’s Story
Lancaster teen with chromosomal disorder thrives, thanks in part to support from CHOP

Adrenal Insufficiency (Addison’s Disease): Grayson’s Story
Expertise and reassurance from CHOP specialists helps Grayson, a teenager from Arkansas, thrive and grow again despite extremely rare adrenal insufficiency.

Anna’s Story: Playing a Role in Research Advances for Friedreich’s Ataxia
Since their first experience at CHOP in 2015, Anna’s parents have felt welcomed and supported by the team in CHOP’s Friedreich’s Ataxia Program. Team members go out of their way to make their daughter feel comfortable and cared for, and they have a sincere commitment to providing care that takes the whole child into account.

Aaron’s Story: Surgery, Chemotherapy and Stem Cell Transplant for Medulloblastoma
When Aaron was 4, he was suddenly diagnosed with a brain tumor and had to undergo seven months of arduous treatment. His family will never forget the teams in neurosurgery, oncology, nursing and child life — and the Phillies and their South Jersey community — all of whom lifted Aaron up throughout his journey at CHOP.

Isaiah’s Story: Management of Congenital Nephrotic Syndrome
Isaiah was born with congenital nephrotic syndrome, the same genetic mutation that caused his older brother to die in infancy. Isaiah’s improved experience and outcome showcases how multiple departments at CHOP work together to ensure the best patient and family care.

Expert Cardiac Care, Close to Home: Roman’s Story
Following life-saving heart surgery, a newborn receives top-ranked cardiac care at the Allentown Cardiac Center.

Navigating a Continuum of Care for GACI: Natalie's Story
First diagnosed in utero, Natalie, now 10, benefits from cutting-edge CHOP treatments and a shared-care model that couples CHOP visits with remote monitoring.

The World’s Smallest Pacemaker: Cameron’s Story
An adapted device and minimally invasive heart surgery give a newborn with heart block the boost he needs.

A Life-saving Pediatric Partnership: CJ’s Story
CHOP’s alliance with Main Line Health streamlines the emergency transfer of a newborn with a life-threatening heart condition.

DICER1 Syndrome: Ellie’s Story
With a genetic disorder that increases her risk of developing tumors, Ellie is seen regularly at the Cancer Predisposition Program.

Eating Disorder: One Mother’s Story
When her teen son was hospitalized with an eating disorder, his mother helped him overcome it, with CHOP’s help.

Experimental Gene Therapy for Hemophilia B: Bill’s Story
Bill’s hemophilia caused several serious health crises. After nearly 60 years of continual treatments, a gene therapy transformed his life.

Siena’s Story: Fetal Surgery for Myelomeningocele
A life-altering experience — and life-changing care — at Children’s Hospital of Philadelphia’s Richard D. Wood Jr. Center for Fetal Diagnosis and Treatment inspired Siena’s family to ease the burden for others.

Celiac Disease: Cameron’s Story
New Jersey parents credit CHOP for helping their toddler bounce back after celiac diagnosis and treatment.

Health and Well-being Clinic: Miaya and Micah's Story
Miaya and Micah were bigger than other kids. Instead of feeling ashamed, they changed their lifestyles — and their BMI — with a focus on health, not weight.