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Updated: 5:29 PM Aug 21, 2009
Living With Muscular Dystrophy
Andy is 15-year-old from Sparks who has a positive outlook on every aspect of life. Greg is a forty-five year old man with an incredible zest for life. Both are extraordinary, and they need your help. Doctors say they're terminally ill with forms of muscular dystrophy.
Posted: 12:07 AM Aug 21, 2009Reporter: Christina Pascucci Email Address: christina.pascucci@kolotv.com |
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The biggest annual fundraiser of the year for the local chapter of the Muscular Dystrophy Association was held Thursday. The MDA raises money to pay for research, and to help local people stricken with the disease.
It's a heart-wrenching disease. Two hundred people in Northern Nevada alone are affected by Muscular dystrophy, and the MDA tells us that muscular dystrophy is actually an umbrella term for forty three different diseases. The two most common types are Duchenne and ALS-- both typically, are terminal.
Andy was born on a hot summer day, healthy...or so his mother thought.
Analine Acevedo says when her son was four she noticed "he was getting tired faster...he started to fall not all the time."
And by the time Andy was six, he went in for a check-up after a teacher told Ana something seemed wrong.
"He gave us terrible news he was diagnosed with muscular dystrophy," says Ana.
Andy has Duchenne disease, one of the most severe child forms of MD. A wheelchair is not what Ana pictured for her son's future.
Andy says, "[he] learned it affects the muscle. Eventually [he'll] get weaker, so it makes my muscles weaker so it's hard to move...I can't even walk."
Andy says what he misses most is building sand castles and taking hikes. The day we interviewed Andy, it was his fifteenth birthday. Kids with Duchenne syndrome have an average lifespan of sixteen, according to the MDA.
At 45, Greg Colyer's life is drastically different from what he envisioned. He was diagnosed with ALS, or Lou Gehrig's Disease, in May of 2007.
Every 90 minutes, someone is diagnosed with the disease, and every 90 minutes, someone dies from it. And the disease progresses quickly.
For Greg, it all started with an atrophy in his calf, and a couple years later, Greg tells us, "I don't have the lung capacity to do all simple things; this hand is useless."
His wife Jeanette says, "It's really hard to see him from being really active he used to surf used to ride motorcycles to not being able to do anything."
But Greg never asks why it happened to him. He says he's grateful for his blessings. "I've had a good life. I have a beautiful wife. I've traveled the world. I have no regrets...I went skydiving this past January for my 45th birthday. I'm optimistic."
"Who knows? They might find a cure before my lifetime is over."
You can help Andy, Greg, and hundreds of others in Northern Nevada with muscular dystrophy by donating to the local chapter of the Muscular Dystrophy Association. Donations go partially toward research to help find a cure. To do this call 775-333-6790 or go to mda.org
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