Support Registry Update

Today is National AHC Day!

In support of
Help Ethan Walk with Trexo Robotics
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This day is dedicated to all the individuals diagnosed with Alternating Hemiplegia of Childhood (AHC). AHC is a one in a million disease and Ethan is our AHC champion!

He was diagnosed at 2.5 yrs old. AHC has robbed him of so much; because of AHC Ethan will never be able to do things that most take for granted. That being said Ethan is one of the bravest, kindest, happiest people I know.  He is my hero..he builds me up when I am having a bad day and never complains about the lot he has been given in life. 

Yes, AHC took away his ability to walk, to use the left side of his body and so many other things..but it cannot take away the hope, the love and the desire Ethan has to live his best life.  Thanks to all of you and to Trexo we have the chance to give him something back - his ability to walk and we cannot wait until we get the Trexo and make this happen.   

Today we raise an index finger in honour of International AHC Day and honour Ethan and the individuals who fight every day with this incredibly difficult disease. 
 
Love

Claire 

   

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Comments

Ted Thompson

This is so inspiring, Claire. Most of us are so quick to complain about our niggling little inconveniences, or our aches and pains. Then we hear about someone like Ethan, whose difficulties far outweigh our own, yet he keeps smiling and doesn't complain. Makes one realize how petty our complaints are. Thank you for reminding me that we should be happy whatever life brings our way. And thank you Ethan for your inspiring courage and spirit.
  • 11 months ago