The Woodward News

Features

September 7, 2012

Firefighters collecting donations to help kids with neuromuscular diseases

Woodward, Okla. — Woodward Firefighters will be out in force Saturday, Sept. 8 collecting money as part of the "Fill the Boot" campaign to support the Muscular Dystrophy Association (MDA).

Starting at 8 a.m., firefighters will have boots in hand out at the intersection of 9th St. and Oklahoma Ave. asking for donations on behalf of children with neuromuscular diseases, children like brothers James Ruel, 4, and Cannon Carnagey, 11, of Vici.

James and Cannon both have spinal muscular atrophy, which according to the MDA website (mda.org), is "a genetic disease affecting the part of the nervous system that controls voluntary muscle movement."

The disease affects neurons in the spinal cord disrupting the signal that the nerve cells then send to various muscles in the body, when then grow smaller (atrophy) from lack of stimulation, the website states.  

Because of the disease's effects, the boys use motorized wheelchairs to get around.

Their mother Jennifer Carnagey said that Cannon has been "wheeling around" since he was 18-months-old and James has been doing it since he was just 10-months-old.

The News visited with the Carnagey family on Friday morning as the boys toured the Woodward Fire Station and their father Patrick Carnagey cooked hamburgers and hot dogs for the firefighters as a thank you in advance for their efforts to support MDA through the Fill the Boot campaign.

Click below to watch a short video of the boys spraying a fire hose during their visit to the Woodward Fire Department.

Jennifer told The News that her sons just got new wheelchairs this year.   She said the wheelchairs have to be replaced about every 3 years.

"And those chairs are beat to thunder in 3 years with them (her sons) being little boys and us living out in the country," she said.

The wheelchairs, which cost the family over $100,000 for the pair, are just one of many costs that arise out of the boys' disease.  There are also hospital bills and the costs of new braces for their legs, Jennifer said.

However, Jennifer and Patrick said that MDA has helped the family to manage those costs.

"They just support us a bunch," Patrick said of MDA.

For example, Jennifer said the family uses an MDA clinic which is an invaluable resource as it "coordinates all our doctors appointments" and takes care of insurance paperwork.

The help with insurance was one of the things that Patrick said he has appreciated most about MDA.

"For the boys' wheelchairs, MDA will send notes to our insurance and when it comes from the MDA, there's never any problem with getting it passed through insurance," he said.

But there's something that MDA offers the family that means even more - a chance for the boys to enjoy summer camp just like any other child.

"MDA has a summer camp every year and they just live for it," Patrick said.

While James is still a little too young to attend camp, since campers must be at least 6-years-old, Cannon has attended camp for the past 5 summers.

For Cannon there is only one word that can describe the MDA camp experience, "awesome!"

During camp, Cannon is able to enjoy all the summer camp staples like fishing, swimming, campfires, and team games like soccer.

"They call it power soccer," Cannon said.  "They put little fenders on the side of the chairs with zip ties.  And we have this big soccer ball so that it doesn't get stuck under anything. Basically, it's just like soccer, but just with fenders on wheelchairs."

His grandmother Marie Hunter said that Cannon enjoys the competitive nature of the game.

"He's ruthless at it they tell us," Hunter said.

One of the highlights of MDA camp is the talent show, Jennifer said.  This year Cannon said he did a magic trick using magnetic rocks for his talent.  However, he said he couldn't divulge any more about the trick because "a magician never gives his secrets away."

Both Jennifer and Patrick said that their son loves camp so much that "he doesn't want to come home."

"It gives him a week away from Mom and Dad and it's time that is devoted just to them," Patrick said.

In addition to the support for families and the opportunities it provides to children, another important aspect of MDA is the research the organization does into the causes of and treatments for neuromuscular diseases, Jennifer said.

"MDA provides research for around 75 different neuromuscular diseases," including the spinal muscular atrophy that affects her sons, she said.

It is for all these reasons that the Carnagey family supports MDA and asks others in the area to do the same.

Jennifer said that neuromuscular diseases, like spinal muscular atrophy (SMA), are more common that some people may realize.

"They say there's something like 1 in 6,000 births where the child has SMA," she said.

Also in the case of SMA, she said that 1 in 40 people are carriers of the recessive gene that has been linked to the disease.  When 2 of these carriers have a baby together, there is a 25 percent chance that their child will have the disease, she said.

"But you don't really know you're a carrier until you have a child with it," she said.

In Northwest Oklahoma and the Panhandle, Jennifer said her sons are the only 2 children with SMA, "but there are other forms of muscular dystrophy out there that affect more children."

So for those who may be unsure about donating to MDA during the Fill the Boot campaign, Patrick said he just wants to let the public know that there are children in the area who directly benefit from MDA programs.

"We just ask that they support MDA because they do a lot of good," he said.

 

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