GRANITE FALLS — As John Haskett regaled guests with stories of his video game prowess, his mother had a gentle reminder for him.
“Open your hands, John.”
The junior from Granite Falls High School rolled his eyes, but knew his mother, Marie, was right.
Keeping his fingers from curling into a fist is part of his daily fight against Duchenne Muscular Dystrophy, a genetic, degenerative disease that affects his voluntary muscles.
John, 17, needs to keep his hands from contracting for as long as he can.
Boys born with Duchenne’s lack a protein that keeps muscle cells intact. Typically, the condition he has progresses to the heart and breathing muscles and survival beyond the early 30s is rare, according to the Muscular Dystrophy Association.
John doesn’t dwell on the future.
To him, life is about enjoying each day.
He’s happy to talk to anyone about his condition, including other young people with muscular dystrophy, which encompasses a variety of genetic disorders that affect muscles.
His willingness to help others is being recognized.
John has been named Washington state’s ambassador for the Muscular Dystrophy Association in 2010.
“It’s a lot of talking, which is what I like to do,” John said with a smile.
He should do well, said Eddy Lindenstein, a coordinator for MDA North Sound, a region that stretches from Edmonds to the Canadian border.
John and his mom will travel the state to bring attention to muscular dystrophy and similar neuromuscular conditions. To them it is a crusade waged on several fronts. They talk about the importance of raising money for research and for providing for the unique needs of people with muscular dystrophy.
John is a walking testimonial about the joy of summer camp for children with muscular dystrophy.
Truth be told, the year ahead won’t be that much different than recent years.
His family has a track record of helping raise money for the Muscular Dystrophy Association. In October, John, his sister and his mom worked the streets of Granite Falls alongside firefighters for six hours to collect $2,800 in a “fill-the-boot” fundraiser.
“That’s just in little old Granite Falls,” Marie said. “All year long we are trying to raise money and are doing as many benefits as we can for MDA.”
Over the years, there have been sales of shamrocks, the collection of charity “bail” money for elected officials and business people placed in fake jails, and an assortment of other fundraisers. Last year, John appeared on a MDA telethon.
Now, they are searching for a venue for a rock concert that would benefit MDA.
Lindenstein said he pushed hard for John to be selected because he knows how well he relates to others.
“It sounds cheesy to say, but he is like the all-American kid,” Lindenstein said.
He’s a video-playing high school student who has been a successful deer hunter, even in his wheelchair.
John said he looks forward to the year ahead and talking to other kids like him.
His mom said she knows she can’t do anything for John’s lungs or heart, but she can try to make each day enjoyable and purposeful. Being the state’s MDA ambassador is part of that.
“We just want his life to be full,” she said.
Eric Stevick: 425-339-3446, firstname.lastname@example.org.