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Epilepsy Blog Relay: Naomi shares Ethan’s story of ARX, a rare genetic disorder

March 11

This post is part of the Epilepsy Blog Relay™ which will run from March 1 to March 31, 2018. Follow along!

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 learn so much, increases his awareness and becomes stronger and understands more every day. Ethan can now communicate well with his eyes, can stand for longer periods of time in various aids and even managed to walk down the aisle at our wedding in his walking frame. Ethan is able to understand some symbols and pictures and is also able to understand his routine. Throughout his life, despite having regular seizures and many bouts in hospital, Ethan smiles and laughs all the time. He is a joy to be around and lights up my world every day.”

Check out Naomi’s Post

 


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