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Community reaches out to teen paralyzed by rare disorder

8:55 AM, Aug 31, 2013   |    comments
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Kyle Mules easily recalls the day in September three years ago when a cold sent him to the school nurse's office. The note she wrote to send him home is tacked up beside his bed.

But the following days and months would become a painful blur as Guillian-Barre Syndrome took him from a healthy growing boy to completely paralyzed in 12 hours.

The disorder causes the immune system to attack the central nervous system, destroying nerve connections and causing varying degrees of paralysis.

Kyle's case was the most serious East Tennessee Children's Hospital had ever seen, according to his parents.

Though their son couldn't move he still retained his sense of touch.
"I could feel everything. An itch was horrible," said Kyle. "I had an itch for four months one time."

Since then Kyle has made significant progress towards his recovery. The 14-year-old has limited use of his arms and legs and can walk using braces for nearly 30 minutes before going back to his motorized wheelchair.

But the hiking and basketball games he used to enjoy with his parents and brother are a thing of the past, at least for now.

"Before, I liked to go hiking, fishing, I liked to play basketball," said Kyle while sitting in the bedroom decorated with murals his mother painted to resemble a campsite in the woods. "I get out a little, but just not like I used to."

Mother Kelly Mules says it's important to her that Kyle get out of the house and participate in things he used to love before GBS stole his ability to walk.

"For me as Kyle's mom, it's important to show him we can still have fun, we've just got to find a different way to do it," said Mules.

But getting Kyle in and out of the family's minivan limits their excursions.

"I'm getting bigger and heavier and my mom and my dad have to dead-lift me into the chair and out of it," said Kyle.

"We have this need for a handicap accessible van, and we can't afford it," said Mules.

Four months in the hospital, followed by years of recovery have taken a financial toll on Kyle's self-employed parents. They have hundreds of thousands of dollars in out of pocket expenses for his care and when they realized a handicapped accessible van wasn't within their family budget, they reached out via a crowd sourcing funding site called Go Fund Me.

Within a week they had more than $4,000 in pledges.

"I don't know what to say, it's amazing that that many people have opened up and are willing to help us," said Mules.

They hope to raise a total of $9,000. Then they intend to sell their existing minivan and pool the funds to purchase the new vehicle, which they estimate to cost between $13,000 and $16,000 for a used model.

Kyle says he's amazed at the generosity of friends and strangers alike. He believes his illness is part of God's plan for his life, and the donations are further evidence to him that there is a purpose behind his suffering.

"God did this for a reason," said Kyle. "It seems like since I got sick, lots more people have been getting together."

There is no cure for GBS and the family is uncertain how Kyle's recovery will progress, but Mules says she also takes comfort in the belief that God is in control of their family's future.

"This is God's journey that we're on," said Mules. "This is going to be whatever he wants it to be."

For more information on Kyle and how you can donate, visit

Kyle Mule's Go Fund Me page

 

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