Myotonic Dystrophy: Family Stories

A decade after their son Jack's DM diagnosis, Kristen Vassallo and John Fitzpatrick are active in efforts to educate others about the disease, and the message they preach from their experience is one of hope.

From coping to community engagement, the Korsgaard family has found strength in the Myotonic community and approaches life with love and enthusiasm.

Belen Esparis uses her medical expertise to help her daughter Emily navigate life with DM. "I just want her to keep trying," she says. The Esparis-Kugler family has raised more than $35,000 for the Myotonic Dystrophy Foundatio and DM research since they learned about the disease.

An active Myotonic advocate, fundraiser and community member, Teresa Schmertman shares her approach to life and living with DM. "It's about a passion for the cure," she says, "second only to my passion for my family."

Alain Geille, one of the organizers of IDMC-10, brings a real understanding of DM to both IDMC and the Association Française Contre les Myopathies, as both his son and wife are living with DM1.

Sarah Berman and her daughter Zoé embrace the challenges they are faced with, and find strength and support from the Myotonic community.

Meet Larry Lord, architect and community volunteer living in Atlanta, Georgia, who is a single father of two grown sons living with childhood-onset DM.

Three years ago, Sarah and Sam Pontifex of Adelaide, Australia, had never heard of myotonic dystrophy, but their three children were experiencing shared symptoms that they knew could not be the result of mere coincidence.

With his wife Kelly at his side, Christian Lundy of Ottawa, Canada endured weeks of hospitalization and intubation. Doctors became worried when Christian didn’t improve as quickly as expected and began to take a closer look at the possible reasons for his slow recovery.

As corny as it sounds, my wife Lauren and I met ten years ago at my best friend's wedding. We had a hard time starting a family, so when we learned of Lauren’s pregnancy in 2010 we were thrilled! When our daughter was born we had no idea that DM affected anyone in our family.

© Myotonic Dystrophy Foundation. All rights reserved.