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One of Jerry's kids
Bryan Davis seems like a typical 3-year-old kid. In public, the cute little boy stands next to his mother, whispering to her, and smiles shyly at strangers.
Unfortunately, the Oak Harbor boy has a disease that may cut his life short if a cure is not found. Its called Duchenne, a kind of muscular dystrophy that causes general weakness and muscle wasting. At this age, it affects his walking ability and prevents him from running and jumping.
Nevertheless, Bryan is a little trooper. Hes really happy, his mother, Kris Davis, said. He gets tired really easy, but he just keeps on pushing.
Kris brought her son to a unique fund-raising event for the Muscular Dystrophy Association at Oak Harbors Kasteel Franssen restaurant Thursday. He might not have realized it, but the crowd of business people were there to help him and others afflicted with neuromuscular diseases.
Jen Gillick, director of the Northwest Washington branch, explained that the association was arresting the town of Oak Harbor for a day. The Oak Harbor business people are charged with having a big heart, she said.
Kasteel Franssen donated food and space for the rather pleasant jail, or as Gillick called it, a maximum appreciation facility.
She explained that local business people volunteered to be jailed and their bail was set at $1,200 which is the cost of sending to kids two summer camp. They had to call around to friends and associates in order to raise their bail amount, which was really a donation to the association.
In all, the inmates raised $35,000. It was phenomenal, said Brianna Clark, field representative for the North Sound chapter. The city of Oak Harbor was absolutely wonderful. I know we have a lot of patients in the area and its great that we made that big of a difference.
According to Gillick, the money thats raised will remain in the local area. It will help fund clinics, research, education, the purchase wheelchairs and leg braces, maintenance of a loan closet of durable medical items, and sending local kids to a special summer camp.
Actor Jerry Lewis, the national spokesperson for the association, turned the annual associations Labor Day telethon into a nationally-known event and lent his name to the group Jerrys Kids even though many of those afflicted are adults.
Yet Gillick said the average person still dont know much about muscular dystrophies and other disorders. In fact, there are dozens of neuromuscular diseases included in the associations list. The diseases have different ages of onset, affect different parts of the body and differ in their progression and seriousness.
Perhaps the best known of the diseases is ALS, or Lou Gehrig disease. Its a very rapidly progressing disorder that affects adults in the prime of their lives. Duchenne muscular dystrophy only affects little boys, with rare exceptions.
The two things all the diseases have in common, Gillick said, is that they all affect the neuromuscular system and theres no cure yet.
One of the most important things the association does is fund research into the diseases worldwide, including projects at the University of Washington and the Fred Hutchinson Cancer Research Center. Top scientists are developing and testing potential treatment in gene therapy, stem cells and drug therapy.
Gillick said a lot of hope lies in finding cures. Weve making strides in research, but were not there yet, she said. Thats why things like this (fund raiser) are so important. So we can continue funding research and figure out what causes these mysterious diseases that really affect people and shorten their lives.
Kris Smith is hoping for a cure for Duchenne. Both her uncle and great uncle had the genetic disorder. Her uncle died when he was just 6 years old. The disease becomes deadly when it starts to affect the heart and respiratory muscles, which may start to happen in the teen years.
While scientists are exploring gene therapy and other research, she said the best she can do is bring her son to physical therapy and hope for the best.