DAILY LIVING & MOBILITY

Sweet Charlie-Anne O'Mine: Defying the Odds of SMA

Rare Disease & Syndrome

Cherie Ehlert

Miracle Girl Beating SMA

Charlie-Anne was born on June 22nd, 2009. She was (is) absolutely PERFECT. At 6 months old Charlie was diagnosed with SMA Type 1- the number one genetic killer of children under 2, like ALS in children. The doctors told us Charlie only had a few months to live, and we were devastated. Charlie is in a wheelchair, uses a suction and feeding machine and a BiPAP machine at night to help her breath.   

Children with SMA pass away from complications from the common cold. We have had many close calls with Charlie over the years, but she just keeps defying the odds! Charlie is 8 now and is in grade 3! She has a wicked sense of humor and is otherwise your average kid! Charlie started the first ever available treatment for SMA last January and we are noticing many changes in her already. She is getting stronger everyday and we can't wait to see what the future holds for her!   

Charlie fundraises for our local children's hospice and SMA research and has helped her, 'Charlie's Angels' team raise over $175,000 to date! NEVER GIVE UP!

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