WINNETKA, Ill. (NewsNation Now) — Watching 5-year-old Hunter Small strap on his helmet and ride his Spiderman bike may not seem like a big deal – but it is.
Hunter and his younger brother Noah, 4, both have Duchenne muscular dystrophy.
“Duchenne is a progressive disorder of the muscles,” the boys’ mother Alison Joseph explained. “There’s currently no cure and it’s fatal. What happens is over time the muscles start to weaken.”
Also known as “DMD,” the disorder is rare, genetic and ultimately fatal.
“What ends up happening is the heart muscle is affected, which is what causes the disease to be fatal,” Joseph said.
Life expectancy is around 20 years old. The disorder primarily affects boys. Older brother Carter doesn’t have it, but both of his younger brothers were diagnosed in 2017.
Shortly thereafter, the family started the Small Heroes Foundation and with it, a “Get Yolked Challenge” fundraiser to help raise awareness and money for DMD research.
Here’s how it works: you need one hardboiled and one raw egg. Choose an egg and post the video to social media of you cracking it on your head, then nominate three other people and donate $10 to the foundation.
“There’s so much hope that a treatment that could be life changing is a few years away,” Joseph said. “They’re huge Notre Dame fans. We tell them we will come visit them someday when they’re on campus at Notre Dame, so that’s our goal right now.”
William Small, the boys’ father added: “Your life immediately changes. Your choice is to wonder why that happened or your choice is to say this is our life what are we going to do with it?”
Through research life expectancy into the early 30s is now possible for some people with the disease. The family says 100% of the money raised through the Get Yolked Challenge will go toward genetic research.
So far, the Small Heroes Foundation has already donated more than $75,000 toward that research.