Naomi shares Ethan’s story of ARX, a rare genetic disorder

Naomi’s Story Naomi’s blog, Ethan’s Stars, shares stories from their family and from Ethan’s life with Aristaless Related Homeobox or ARX. It took the family two years to get the diagnosis of ARX, a rare genetic disorder which causes epileptic seizures and developmental delay. According to Naomi, “Every year Ethan continues to … Read More

Epilepsy Blog Relay: Epilepsy isn’t my only story

Recently, someone asked me to talk to a small group. I wanted to choose a story that is inspiring, something that would relate to these young adults, and something that would stick with them as they started a new journey. I couldn’t help but wonder: is epilepsy my only story? Is this how people identify me…as the girl with epilepsy who ended up doing well in life, despite doctors telling me I may not?

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