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Living in the Moment While Looking to the Future With Rare Disease

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themighty.com

Like any father, I dreamed of the day when I could see my daughters get married. But when I was 17, I was diagnosed with facioscapulohumeral muscular dystrophy (FSHD,) and my doctor told me I might not live past 40.

So this past autumn, at 54 years old, I felt especially grateful to be at both of my daughter’s weddings. Growing up in Westchester County, New York, my life seemed to be what most would consider “normal.” But by the time I was 13 I started to notice I was different from my friends.

I was very small—always the last kid picked for sports teams. It was clear my muscles were not growing at a normal rate and my shoulder blades started winging.

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