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The McCain Family’s Story

When Ruth and Kody McCain’s first son was about 18 months old, he was diagnosed with Partial Merosin Congenital Muscular Dystrophy, a genetic condition where both parents are carriers but do not generally have symptoms of the disease. With this diagnosis, the couple learned that there was a 1 in 4 chance that their other children would have it. And of their six children, both their oldest son and their oldest daughter have been diagnosed with muscular dystrophy, though their other children could be genetic carriers.

With two children affected by muscular dystrophy, the family connected with the Muscular Dystrophy Association of Nebraska. This type of muscular dystrophy affects the skeletal muscles, and the family works with physical therapists and doctors and visit the Munroe-Meyer Institute in Omaha.

The Muscular Dystrophy Association (MDA) also connected the family with the MDA Summer Camp. At first, Ruth said she wasn’t sure about the kids attending camp. “As a protective mom, I didn’t want my babies to go.” But three years ago, when they were six and nine, respectively, her daughter and son went to camp for the first time.

“It was a nice family experience,” Ruth said, including for her other children, her mother and her mother-in-law. “It was important to see other kids that might be going through similar things in life and for my children to play with other kids who would accept them.”

Now nine and 12, her children have gone back to camp every year since. “I wish I’d sent them sooner,” Ruth said. “It helps them cope with life, to see other kids and realize that I’m here so I can help. All kids are treated equally at camp.”

MDA also connects them with other families affected by muscular dystrophy, including a family in a nearby town. That connection helps because, as Ruth said, “A lot of people don’t understand it.”

After their son was diagnosed, Ruth remembers being in church and noticing another family whose little boy was sick. She remembers telling her husband, “Isn’t that sad? They’re so young and they have to deal with that.” Then she realized that she and her husband were young, too, and wondered, why us? “But God gives us what we need, what we can handle,” she said. “God chose us to be parents to special kids so we can give them this life.”

Ruth focuses on never giving up. “You can make life better and help them,” she said, “whether it’s daily routines, healthy food, exercise. There’s always something that can help.”