A Long Slow Trek and a Fast Race
Donation protected
My son Gus has Duchenne Muscular Dystrophy. I have watched it take away his strength in the 9 years since he was diagnosed. When he was 4, it was difficult to tell the difference between him and a child without Duchenne. Today, at 13, he cannot climb stairs, he cannot get up from a chair without help and he cannot walk from classroom to classroom at his school.
But we don't focus on what he can't do, we focus on what he can do. He can cook a mean omelet, he loves swimming and he is an expert on wildlife. He is fearless - he's a roller coaster junkie and he will tackle any waterslide we've ever seen (when I carry him up the stairs). He is kind, he's a good friend and he stands up (figuratively) for kids who are being bullied. He is in the school chorus, he plays drums in the band and he acted school play. Yes, he loves Minecraft and he probably plays too many video games. Minus Duchenne, he is a pretty average kid, but considering the challenges that Duchenne throws at him every day, he is absolutely extraordinary.
In the years since Gus’ diagnosis, we have met so many extraordinary kids who also have Duchenne. Of course, they vary widely in their interests and abilities, but they all share the hope that scientific research will finally cure this disease and save their lives. In the meantime, they bravely tackle each day, dealing with the impediments that Duchenne places before them. They are literally in a race for their lives.
In the next two months, I will complete two physical challenges. In August, I will hike 55 miles to the top of Breccia Peak, an 11,000 foot mountain in Wyoming. In September, I will complete the Buzzards Bay triathlon in Massachusetts. While each of these will be challenging, they pale in contrast with what a child with Duchenne faces every day. My goal is to raise money both for research and for helping kids and families who have unforeseen financial burdens due to the disease (paying for ramps, wheelchairs, scooters and so on). I will post regular updates as I train for these and complete each challenge. Please consider a small donation to support me and to support young people with Duchenne.
But we don't focus on what he can't do, we focus on what he can do. He can cook a mean omelet, he loves swimming and he is an expert on wildlife. He is fearless - he's a roller coaster junkie and he will tackle any waterslide we've ever seen (when I carry him up the stairs). He is kind, he's a good friend and he stands up (figuratively) for kids who are being bullied. He is in the school chorus, he plays drums in the band and he acted school play. Yes, he loves Minecraft and he probably plays too many video games. Minus Duchenne, he is a pretty average kid, but considering the challenges that Duchenne throws at him every day, he is absolutely extraordinary.
In the years since Gus’ diagnosis, we have met so many extraordinary kids who also have Duchenne. Of course, they vary widely in their interests and abilities, but they all share the hope that scientific research will finally cure this disease and save their lives. In the meantime, they bravely tackle each day, dealing with the impediments that Duchenne places before them. They are literally in a race for their lives.
In the next two months, I will complete two physical challenges. In August, I will hike 55 miles to the top of Breccia Peak, an 11,000 foot mountain in Wyoming. In September, I will complete the Buzzards Bay triathlon in Massachusetts. While each of these will be challenging, they pale in contrast with what a child with Duchenne faces every day. My goal is to raise money both for research and for helping kids and families who have unforeseen financial burdens due to the disease (paying for ramps, wheelchairs, scooters and so on). I will post regular updates as I train for these and complete each challenge. Please consider a small donation to support me and to support young people with Duchenne.
Organizer
Steve Dreher
Organizer
Peterborough, NH
