Around Christmas of 1968 my family noticed that my shoulder blades protruded (winged). At age 13 I was diagnosed with Facioscapulohumeral Muscular Dystrophy (FSHD). There is no history of muscular dystrophy in my family. The doctors said it was spontaneous gene mutation. FSHD is a progressive disease causing the wasting away of muscles. http://ghr.nlm.nih.gov/condition/facioscapulohumeral-muscular-dystrophy
I have been living with this disease for 45 years and struggling to maintain my independence. I taught elementary school for 35 years. For the last 4.5 of those years I had to use a walker to go to work every day. I retired in 2012. In the last couple of years I have needed a wheelchair to shop or go anywhere requiring extended walking. I cannot get out of a chair without help or the use of a lift chair. I cannot lift my arms over my head. If I fall, I do not have the strength to get up. I can only stand for short periods of time. The "good" muscles are constantly strained trying to compensate for those that have atrophied.
I recently learned of a treatment for FSHD where my own adipose cells (not embryonic) could be harvested and used to, at least halt the progression, and possibly improve my mobility. The cost for one treatment is $15,000. My insurance will not cover any of the cost. Some patients have reported marked improvement with more than one treatment.
My daughter who is 26 has begun to show signs on FSHD. While she has not been formally diagnosed, I want her to receive the treatment also.
I am asking for $34,000 to cover both of us being treated once, transportation, and other related costs. My dream would be to have multiple treatments so that we could rebuild as much destroyed muscle as possible.
Thank you for considering a donation to help our dreams come true to remain independ
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