Meet AHC Champion Ethan (ON, Canada)

Meet AHC Champion Ethan (ON, Canada)


Ethan’s mom Claire shared this very heart-wrenching story about her son, to help shed light on Alternating Hemiplegia of Childhood in the hopes of motivating people to help get to the cure. She allowed us to share it here with you in hopes of reaching more people. Please help make that happen by sharing it far and wide.

(Posted Originally 20 September, 2014)

It was this Saturday 2 years ago, Ethan (now 11) had a paralyzing AHC episode that was so severe it changed his life forever. You see Ethan is now no longer able to walk, no longer able to use his left arm and has trouble talking thanks to Alternating Hemiplegia of Childhood. A neurological condition that robs him and other children of so much. This time 2 years ago, little did we know that he wouldn’t wake up the next day and be back to his normal usual self. He would spend the next month in hospital while doctors tried everything to try and turn the damage around but to no avail, and when they realized they couldn’t they moved us to a rehab hospital for another 3 months to try and get his body to work again. He couldn’t talk, eat, sit, let alone stand or walk. Over time and with hundreds of hours therapy sessions he did recover some mobility and skills but it continues to be an uphill struggle every day. What do you say to a child that’s sobbing and picking up his arm asking why it no longer works?

No, Ethan is no longer able to do a lot of things he used to be able to do, like ride his ATV in the photo taken before that fateful episode. He has had to relearn many skills and adapt to his new norm. That being said, he is one of the most amazing, happy, kind and considerate people I know and I will be forever thankful that we got to bring our son home with us and cherish each day.

I just wanted to post this in recognition of what he lost that day two years ago and hope that I raise a little bit of awareness for this disorder by sharing Ethan’s story.

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