Myotonic Dystrophy: Family Stories

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

Laura Gershenson is a high school science teacher, wife, and mother of two small children living in Dallas, Texas. She was diagnosed with DM in 2011 and found her way to Myotonic shortly afterwards.

Eric Jensen and his three-year-old son River will be cycling through the state of Iowa in the Des Moines Register’s Annual Great Bicycle Ride Across Iowa (RAGBRAI), July 20-26. The Jensens have named their ride “River’s Ride” and are dedicating their journey to families affected by DM.

“My condition is not who I am. It does not define me.” This is one of many affirmations that Amy Ream adopted after being diagnosed with myotonic dystrophy 17 years ago. “I’ve been obsessed about retaining my quality of life, and being stubborn has benefitted me greatly,” states Amy.

Erich Maurer grew up in a small farming village in northern Switzerland. His mother was diagnosed with DM1 after complications from a surgical procedure.

Val Reeber - who is living with DM2 - and her husband and caregiver Bob share their story, and how DM2 has impacted their family.

© Myotonic Dystrophy Foundation. All rights reserved.