Myotonic Dystrophy: Family Stories

When Marty Benner’s granddaughter, Sophia, was born in November 2006, the doctors and nurses immediately knew something wasn’t right. She was put on life support while they monitored and tested her, yet more than a month later, they still couldn’t figure out what was wrong.

Though their journey has been bumpy, and at times scary, Cecilia Stearns, Danielle and the twins, Matthew and Jonathan, are finding their way by seeking out the support and services they need and learning to take life one day at a time.

Saurabh Rai, a San Francisco-based research analyst, has always been active and physically fit. So when he began experiencing mild myotonia several years ago, he didn’t take it too seriously. By 2009, the myotonia had gotten worse, despite the fact that he was exercising a lot.

Shannon Lord, Myotonic's founding chairman, passed away on June 4, 2013. Shannon had a mild form of DM1 and her two grown sons have childhood-onset DM. She was a compelling speaker, advocate, and fundraiser for the myotonic dystrophy cause, and was responsible for the participation of American family members at the International Myotonic Dystrophy Consortium in 2005 from which Myotonic evolved.

Renee Bux, now 17, was adopted at the age of three months. Her mother, Joy, recalls that, although they knew their baby had a slow start, “We had fallen in love with Renee, and knew immediately that she was part of our family."

Nicholas Stone loves playing basketball and is a valuable member of the team at Deep Run High School in Virginia. Although Nicholas has DM, his diagnosis doesn’t prevent him from participating.

I am Kelly Bormann. I live in Overland Park, Kansas and am married to Steven Bormann. We have 3 beautiful children. Reed (4), Adalyn (2) and our little angel Anna who passed away when she was 6 weeks old. Anna is the reason for this 5K walk called Muscles for Myotonic.

I'm Erica Kelly and I live in Mill Valley, California. I'm married to Jeremy, and we have two boys, Jack and Ben, who are 12 and 14.

My name is Eric Wang, and it's an incredible honor for me to serve as an advocate for myotonic dystrophy, both as a researcher who studies myotonic dystrophy, and as a person who grew up seeing the effects of DM every day.

I’m Josh Crowder. I’m 21-years-old. I live in West Jordan Utah. I have myotonic muscular dystrophy Type 2 and I’ve had it since birth, which a lot of people find unbelievable.

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