Neuroscience Center Patient Stories
1 - 10 of 49
Saethre-Chotzen Syndrome and Encephalocele: Elana’s Story

Elana was born with abnormalities of her skull requiring surgery. When her parents came to CHOP, ‘We knew it was going to be OK.’
Logan's Journey with Rare Syndromes and Speech Development at CHOP

Logan battled Sturge-Weber and Klippel-Trenaunay syndromes, and has triumphed over speech difficulties with the support of CHOP specialists.
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.
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.
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.
Natalie’s Story: Novel Treatment of Aicardi Goutieres Syndrome

Natalie could walk, talk, and was ahead of all milestones for her age. Then, when she was 18 months old, her parents, Nicole and Patrick, noticed her lifting her big toes off the ground when she walked, as though she had a splinter or cut on the bottom of her foot.
Brandon’s Story: Ketogenic Diet Cures Myoclonic Atonic Epilepsy

Read about Brandon's journey from dangerously uncontrollable seizures to seizure-freedom for the past 10 years.
Patrick’s Story: Intravenous Immunoglobulin to Treat MOGAD
For Eileen and Brenden, March 14, 2020, is not only memorable because it was the day the United States declared a National Emergency due to the COVID-19 outbreak. It was also the day their son, Patrick, suffered a concussion that led to a potentially life-changing diagnosis.
Nadia’s Story: Selective Dorsal Rhizotomy for Cerebral Palsy
Selective dorsal rhizotomy surgery followed by intensive physical and occupational therapy enabled Nadia to walk without an assistive device for the first time at age 6.