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Our Family’s Odyssey With Facioscapulohumeral Muscular Dystrophy

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When my wife Leslie and I decided to have children, we knew that becoming parents would change our lives forever. We felt prepared to put our energy into raising them and making sure that they had access to everything they needed to achieve their dreams.

When both of our children were diagnosed with facioscapulohumeral muscular dystrophy (FHSD), a rare and progressive disease for which there are currently no approved treatments, our determination to help them find success and happiness grew even stronger.

Upon reflecting on our family’s journey with FSHD, Leslie and I agree that hindsight is 20/20. Our daughter Meredith seemed physically healthy as a baby, but we remember noticing “quirks” that we now know can be attributed to FSHD.

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