Bristol boy with muscle disorder needs a wheelchair-lift and van

A family in Bristol is looking for a handicap-accessible van for their 6-year-old son, who suffers from a rare muscular disorder.

Posted on May 27, 2014 at 9:16 a.m.

Bristol mom Stacey Willis thinks she has about a year until she won’t be able to lift her son in and out of the car anymore.

Kamarion, 6, has a muscle disorder called x-linked myotubular myopathy. According to the Muscular Dystrophy Association, children born with this disease sometimes don’t live past infancy.

If they do, they usually eat through a feeding tube and breathe with the help of a ventilator. Kamarion, or “Kmoney” as his family nicknamed him, has both.

He weighs about 52 pounds right now, his mom said, and he’s about to outgrow his car seat.

Without the seat, “he’s floppy,” Willis said. 

The family is exploring different ways to raise money for a handicap-accessible van with a wheelchair lift.

They've made bracelets and drink koozies that say “Kmoney” and sold them to friends or really, anyone who will buy one. Willis said she’s raised about $400 doing that.

Sharon Brown, “grandmom” to Kamarion and Willis’ other two children, started a Facebook page and an account on the crowd funding website Go Fund Me, asking for donations.

The site has raised nearly $2,000 in about a month but the family is still far from their $25,000 goal.

They will keep chipping away with fundraisers until the money is raised, Brown said.

Kamarion, who’s in kindergarten at Bristol Elementary, goes everywhere with his parents and having a lift and a larger van would make his life much smoother, mom Willis said.

They also take Kamarion to Riley Hospital for Children in Indianapolis several times a year and worry that those trips will become increasingly more difficult as Kamarion gets bigger.

Two fundraising events are planned:

  • Texas Roadhouse customers who bring in a fundraising ticket for Kmoney on June 9  can donate 10 percent of their bill to the Willis family. You must bring in the actual ticket, which can be found on the Kmoney Facebook page.
  • The family will be selling Nelson’s chicken at the Walgreens on the corner of Cassopolis and Bristol streets in Elkhart on July 19. 

To learn more about Kamarion and how to help, visit his page on gofundme.com (search for Wheels for K-Money) or his Facebook page.

Follow reporter Lydia Sheaks on Twitter at @LydiaSheaks

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