Myotonic Dystrophy: Family Stories

After Julia Thorsness’ husband Jim died from complications of myotonic dystrophy at 59, she decided to put her professional and personal experience to work to help DM families.

When Luke Bolt was 13, he noticed his hand would lock up when he wrote with a pencil. When his mother Jodie heard about the problem, myotonic dystrophy was on the top of her list of possibilities.

Although Tim Haylon launched his first Facebook birthday fundraiser in 2018, they Haylon family already had a tradition of financially supporting myotonic dystrophy research.

It was more than five years ago when Jeremy Kleiber went to check on a friend who wasn’t answering his found. He discovered his friend’s body with the man’s three-year-old daughter on his chest, crying for him to wake up.

Chuck Hunt’s daughter Carly was an accomplished equestrian ranked 18th in the nation, but her struggles in school were growing.

When Suzanne Perkins’ 16-year-old daughter Eliza had trouble opening jars and closing car doors, she took the teenager to the doctor, confident she would pin the problem on too much texting. But when her doctor sent her to a neurologist, Eliza’s diagnosis came quickly and with a wallop.

Ask Israel Dubin about himself, and he’ll tell you he’s a Jewish, 65-year-old retired judge, father of three wonderful adult children, and husband to a great wife. What he’s likely not to mention is that he has myotonic dystrophy type 2 (DM2).

Edward “Bud” Ingraham was serving as a U.S. Army intelligence officer stationed in Nuremberg, Germany when the Berlin Wall fell in 1989. During the time he and his wife Bethany spent in Europe, they developed a taste for travel. But in 1992, at the age of 32, doctors diagnosed Bud with myotonic dystrophy and the army discharged him.

As Matthew Brown listened to his cousin Emily describe the symptoms that led to doctors diagnosing her with having multiple sclerosis, he grew concerned. The problems she described—an inability to relax her hand, a freezing of her tongue that made it impossible to talk at times, and gastrointestinal issues—were the same ones he had been experiencing.

Linda Marshall has written a moving overview of her struggles to find a diagnosis for the problems her children faced, and the particular impact of brain-related symptoms on her family.

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