Caregiver Stories - Erica Kelly

Both of Erica Kelly's sons, Jack and Ben, were born with what they now know is myotonic dystrophy. At birth, they had low muscle tone and clubbed feet. Over the next five years, they had full evaluations done at several genetics clinics, but they all failed to come up with any specific diagnosis.

The pieces of her family's puzzle started to fall into place when Erica's brother was referred to a neurologist after he began experiencing grip issues and loss of muscle tone. After he was diagnosed with DM, "it was like a genetic time bomb," Erica says. "We soon discovered that my father's two siblings are affected along with many of their children, and of my three siblings only my eldest sister is not affected. Thank goodness! She is our rock."

Erica found the initial diagnosis of so many in her family - including herself - difficult to grasp. "I felt my life closing in on me. I was so worried about what this would do to my family - my lovely little boys and my husband." She was also frustrated by the lack of resources available for people affected by myotonic dystrophy. In 2007, in an effort to learn more about the disorder, the Kellys attended IDMC-5 in Québec. It was there through a meeting of affected families that Myotonic was born.

Today, Erica and her sons and happy and doing well. "Learning to live with DM is a harrowing journey, but the landscape is changing fast and we have an amazing opportunity to help each other, get organized as a patient community and play an important role in curing this disease."

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