Caregiver Stories - Elizabeth Florence

Elizabeth Florence lives in Dallas, Texas, with her husband, and two sons, Sam and Will. Sam was born with congenital myotonic dystrophy. Will does not have the disorder.

"lt's very difficult to be a mother to a child who is different. Sam sometimes uses a wheelchair and he moves slower than other children. On the other hand, I feel very lucky because my husband and I are healthy and we have the energy and ability to take care of Sam and to be there for our other son, Will." Sam and his brother are very close and have a wonderful, supportive relationship. "God gave us Will because he knew Sam was coming," Liz says of her older son. "He is empathetic, kind, inclusive, and chooses his friends based on whether they are nice to Sam. They truly adore each other, and for that we feel so lucky."

That lucky feeling and the belief that life is more than simply what's handed to you, that it is what you make of it, propelled Liz and her husband to organize the 2011 Sam's Squad Run, a fundraiser that utilized the annual Dallas Marathon as a springboard for their own efforts to raise money for DM research. Their initial goal was to raise $25,000. With no plan and no volunteers or runners, they began the work necessary to have a successful fundraiser. The Sam's Squad Run ended up with 150 runners and 100 volunteers, and thanks to an overwhelming response of friends, family, and contacts in Dallas, they raised $107,000 for Myotonic.

"It was an amazing experience to be able to organize something like this," said Liz. "This fundraiser has led to other opportunities that continue to allow me to contribute and really make a difference long-term."

Sam's Squad is returning for the 2013 Dallas Marathon in December!

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