Living with a Rare Disorder

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Living with a Rare Disorder

Duchenne Muscular Dystrophy

Jonathan Piacentino, 19
Jonathan is a 19-year-old college student majoring in biology. He was diagnosed with Duchenne at the age of four and his motto has always been “I have Duchenne, so what!”

Click here to learn more about Jonathan's life with Duchenne, told from his mother's perspective.

Cystic Fibrosis

Maylie East, 6
I try to remember what I ever had to worry about before CF entered our lives." May's mother, Kat, discusses the hardships of living with CF and raising a six-year-old who dreams of being an architect.

Click here to learn more about May's story, told by her mother.

Spinal Muscular Atrophy

Andrew Slay, 26
Andrew is a college graduate and an entrepreneur with the most positive and courageous outlook on life I have ever known. He has never shared a moment’s self-doubt or indulged in self–pity.

Click here to learn more about Andrew's story, told by his mother, Martha.

 

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