Nicholas’s Story 

Nicholas is 12-years-old and lives in South Carolina. He enjoys being with his friends and family, spending time outdoors, going for golf cart rides, playing baseball with The Miracle League and, he LOVES Peppa Pig!! He is a happy boy who brings joy and laughter to all who cross his path! 

When Nicholas was six-years-old, he began experiencing seizures and what his family later learned to be his first hemiplegic migraine. It was not until two years later that he was diagnosed with a CACNA1A variant. Over a span of five years, he has experienced three hemiplegic migraines, which result in hemiplegia-causing one-sided weakness and regression of skills he has worked hard to gain. When these incidents occur, Nicholas also loses his oral feeding capabilities and must be fed through an NG tube.

Nicholas was diagnosed with CACNA1A variant, p.R1349Q, at eight-years-old.

In 2020, Nicholas was granted a Seizure Alert Service Dog from the Make-A-Wish Foundation, who is named Peppa. In addition to epilepsy, Nicholas is diagnosed with Intellectual Disability, Lennox Gastaut Syndrome, Autism Spectrum Disorder, Attention Deficit Hyperactivity Disorder, Oppositional Defiant Disorder and hypotonia.

His family is thankful for the support of the CACNA1A Foundation and can’t wait to spread awareness that will help fund research and work towards a better future for Nicholas and others affected.