Division of Neurology Patient Stories
1 - 10 of 41
Thomas’s Story: Prenatal Diagnosis and Postnatal Surgical Repair of Encephalocele
One family shares their experience for parents who learn their child has a severe diagnosis before birth
Morgan’s Story: Overcoming Brain Injury After Ischemic Stroke
After just a year of care from CHOP’s Pediatric Stroke Program, 16-year-old Morgan has regained her ability to speak and is back to doing the sports she loves.
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.
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).
Immune Dysregulation: Andrea's Story
When Andrea, 10, began having vision problems, there's no way her family could have predicted the complex diagnostic journey they were about to embark upon.
Cate’s Story: Attaining a Genetic Diagnosis With the Help of the Epilepsy Neurogenetics Initiative
Learning a genetic diagnosis has enabled one family to connect and share their own wisdom and experience with families of children with the same diagnosis.
William’s Story: Gene Replacement Therapy for SMA Type 2
Untreated, children with SMA type 2 will never be able to walk. After receiving a one-time dose of gene therapy, William has gained strength and hit milestones his familiy previously didn't think possible.
Maddie’s Story: Medical Management of Chronic Migraine
The Headache Program team have worked with Maddie to manage her migraine and minimize pain and disruption to her life.
Sophia’s Story: MAGEC Growing Rod Implantation to Treat Neuromuscular Scoliosis
A CHOP occupational therapist's keen observation led to Sophia's neuromuscular scoliosis diagnosis, and supportive treatment to enhance her quality of life.
Jaxson’s Story: Using Telemedicine to Reach Children With Rare Genetic Epilepsies
Telehealth has allowed Jaxson, 3, and his family to stay connected with the Epilepsy Neurogenetics Initiative (ENGIN) from the comfort of their home during the COVID-19 pandemic.