COLUMBUS, Ohio — An Ohio mom says it took her months to say out loud that her son had a rare disease.
“As soon as I Googled it, I knew what we were facing,” said Kelly Maynard. “That kicked off the worst six months of my life.”
Her son, Jackson, was diagnosed with Duchenne Muscular Dystrophy when he was five years old. The disease has no cure.
“Each rare disease may affect a small patient population, but together they affect millions.” After the diagnosis, Maynard quit her job to focus on advocacy work. She founded the Little Hercules Foundation in 2013.
“I just jumped in and tried to figure out where I could be of help, not only to him but to every family and every child who has a horrible diagnosis story,” she said. Maynard works alongside other moms whose children have been diagnosed with rare diseases. Little Hercules does everything from supporting families financially to fighting insurance companies to get medication covered. They also focus on changing the legislature.
“Our policy positions are shaped based on those daily conversations we have with caregivers and patients who are struggling,” said Maynard.
Between her professional life and her personal life, she never gets a break from serious illness, but said she finds her strength in her family and Jackson. “He’s so strong and he’s so brave. Quitting is not an option, failure is never an option so that at the end of this journey, I want him to know that I did everything possible to change the future of this disease and everyone who is diagnosed with it.”
One in 5,000 boys is diagnosed with Duchenne Muscular Dystrophy.