MIDDLETOWN, Ohio — Tristan and Anderson Hayes, despite an age gap of a few years, get along as most brothers do.
However, the Middletown duo share a rare bond that only 15,000 boys in the U.S. share.
19-year-old Tristan and 11-year-old Anderson both have Duchenne Muscular Dystrophy.
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Our news partners at WCPO spoke to the Hayes’ about their journey with DMD and how they are overcoming it.
“Some days it’s hard,” their mother Rachel Hayes said. “It was like a punch to the chest, basically. You’re not expecting it, but we knew with Anderson when I was pregnant with him, there was a 50/50 chance of him getting it.”
Duchenne is a rare and deadly degenerative disease that can affect every muscle in the body, including the heart and lungs.
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It is the most common and severe form of muscular dystrophy which is caused by loss of dystrophin beneath the sarcolemma - the transparent sheath surrounding the fibers of skeletal muscles.
The brothers are two of 15,000 boys in the U.S. living with the disease, and among 300,000 globally.
Most boys don’t survive beyond their late twenties, and those who do are wheelchair-bound by age 12.
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The disease mostly impacts boys, but can only be diagnosed in girls.
“Though it’s rare,” Rachel Hayes said. “And it’s not just genetic. You can have a spontaneous mutation. If it’s never been in your family before your child can still get diagnosed with it.”
Tristan was diagnosed around 4 years old and Anderson was diagnosed shortly after birth. Both are now in wheelchairs.
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“It was heartbreaking,” said their father Doug Hayes. “You don’t want to see your kids have to go through something like that.”
Anderson has a much more optimistic outlook than his older brother Tristan, who has lived with the disease for longer.
Tristan admitted he doesn’t like to think about the disease at all.
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“It’s not really fun once you think about it ... but I’m working with it as much as I can,” he said. “(The biggest challenge) is not thinking about it.”
The Hayes aren’t alone though, they have a network of fellow Duchenne families in Monroe, Cincinnati, and Northern Kentucky.
“It’s nice to have people that close. We’ve gotten together with a few of them,” Doug Hayes said. “You feel a little more normal. They’re going through the same thing we are.”
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The Hayes hope to meet even more families at an all-day workshop held by the global nonprofit CureDuchenne, along with Cincinnati Children’s Hospital.
Cincinnati Children’s Neuromuscular Cardiomyopathy program is one of the leading clinics treating muscular dystrophy in the country.
“I mean people come from all over the country for Cincinnati so we’re lucky to have it that close,” Doug Hayes said.
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Unfortunately, there is no cure for DMD, but clinical trials and medical trials are moving towards a cure.
“We just want to find a cure in their lifetime,” Doug said. “And I hope with the research and the trials going on that we can make that happen.”
Until they can find a cure, the Hayes will continue to live like a normal family, dreaming big and hoping one day a cure will finally become reality.
“I could use an escalator,” Anderson said. “(That’s something I really want to do.)”
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