CARMEL — Mindy Cameron thought she gave birth to a healthy boy in 2001, but slowly she started to notice some minor irregularities.
“He wasn't really crawling,” explained Cameron. “He couldn't sit up independently without support.“
Mindy’s son Christopher had been diagnosed with Duchenne Muscular Dystrophy. The disorder is a genetic and is carried by the mother and passed down to a son.
“Basically, his muscle cell is weak,” explained Cameron.
“When the muscle breaks down, it rebuilds to a degree while they're very, very young, but after a certain time, that muscle will stop regenerating.”
The disorder requires around the clock care and many families make cosmetic changes to their homes to make the area safer for their children. Cameron shared that the impact on families can be huge.
“This impacts a family's choice to have additional children,” shared Cameron. “It might impact a family's choice of where they live, what kind of house they have.”
Mindy works to help her child and others navigate life with Duchenne Muscular Dystrophy through her work as an advocate alongside the Muscular Dystrophy Family Foundation.
“It makes me feel like this has not all been just a horrible thing that happened in my life,” shared Cameron when explaining how it feels to help other families.
The average life expectancy for someone with Duchenne Muscular Dystrophpy is around mid-20's.
Cameron said she feels that the treatment plans are better today than they have ever been and that could extend life expectancy exponentially.
“There's eight therapies,” explained Cameron. “I think you can come up with a really great treatment plan to maximize the years. Not only the length of time that your son has, but the quality of that time.”
