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Super E’s Journey with Nemaline Myopathy

Posted in: Events - Tuesday, August 25th, 2015, 10:09 pm - No Comments on Super E’s Journey with Nemaline Myopathy

Meet Ethan (a.k.a. “Super E”)…

Ethan was recently diagnosed with a congenital myopathy called Nemaline Myopathy (also known as the Rod Body Disease). This is a disease of voluntary muscles that is often non-progressive. The disease affects Ethan’s muscle tone and ability to swallow. In order to assist with his mobility, independence, and physical development, Ethan needed many pieces of medical equipment which were not all covered by government and insurance funds.

We at the T.L.C. Fund for Kids were extremely happy to be able to provide Ethan with a special seating system. According to Ethan’s mother, Ethan will be able to get a lot of use out of the equipment and once he outgrows it, they plan to donate it to the local Queen Alexandra Centre so that it can become a further benefit to families.

If you would like to learn more about Super E’s journey, you can find updates from his family here.

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