Natalie Draisma has been named the Michigan Goodwill Ambassador for the Muscular Dystrophy Association (MDA) for 2011.
The spunky nine-year-old, a member of East Saugatuck (Mich.) Christian Reformed Church, has a rare form of Nemaline Rod Myopathy, a congenital, hereditary neuromuscular disorder that causes muscle weakness.
The ginger-haired girl is quick to describe herself. “I’m pretty, weak, funny, red-head, rare—because that is what my muscle condition is,” she said.
She said the hardest thing about having Nemaline Rod Myopathy is walking. “I get tired really quick and long distances poops me,” she said. “It’s hard to do everything.”
Draisma’s mother, Mary Jo, said Natalie has an adjusted school day in order to conserve her energy and she sees a physical, occupational, and speech therapist weekly.
Natalie also uses her wheelchair at school to help ration energy and eats alone since chewing and swallowing is difficult and time-consuming. A feeding tube supplements her food and a BiPap machine at night helps her breathe.
Natalie has donated to MDA on Labor Day weekend for years, giving the money she earns selling her chickens’ eggs as well as money she makes at her summer lemonade stands where she also sells coffee and dog bones.
Her duties in the coming year will include traveling throughout the state making appearances and speaking at various events.