Donations currently in USD
September 20, 2016
BENEFITING: A FOUNDATION BUILDING STRENGTH INC
Our son Ethan is 2 years old and has a rare muscle disease called Nemaline Myopathy. He is a bright, goofy and sweet little boy who works hard every single day.
NM affects all of his muscles to the point where he needs support for breathing, eating (via feeding tube) and movement. He relies on a long list of medical equipment and large health care team to support him in his life. Ethan loves getting out in his wheelchair stroller so we are doing this walk to raise funds for a cure and also to give him the experience of participating in something he at this point cannot do on his own... walk.
We hope with your donations we can find a life-saving cure or treatment to this devastating disease. Thank you so much for donating to a cause near and dear to our hearts! This is our first of hopefully many walks dedicated to finding a cure for NM.
We will be walking with Ethan in the Thrifty's Kids Run on Sunday, October 9, 2016 at 10:15 am at the Good Life Fitness Marathon in Victoria, BC, Canada.
If you'd like to participate in a walk or run to help us reach our goal, please contact us via FB https://www.facebook.com/HopeForSuperE
Kids Run if you'd like your little one to join: http://www.runvictoriamarathon.com/racing-events/thrifty-foods-kids-run/
If you'd like to register and run on behalf of Ethan and help us fundraise please join our team on crowdrise and register here: http://www.runvictoriamarathon.com/racing-events/registration/
Photo credit: Living In The Light of Rare Diseases