On May 17, 2008, the community of Midlothian, Virginia joined together to support the Wallace family and the fight to defeat spinal muscular atrophy (SMA). Kenny and Visha Wallace’s daughter Taylor was diagnosed in 2006, and last year, the first 5K in her honor was organized.

MidlothianExchange.com ran piece about the event called “5K boosts hopes for SMA research.” From the article:

Taylor Wallace is probably one of the most vivacious 2 ½ year olds you’ll have the pleasure of meeting. She chases her sisters and parents around their driveway, she plays and giggles, she’s gracious when asking for drawing utensils and she has a big ol’ smile on her face constantly. She also has little to no motor function in her legs because of spinal muscular atrophy, but she’s never let that slow her down and that’s exactly why she now has a 5K race named after her.

The second Taylor’s Hope 5K traced the roads and park around James River High School on Saturday with proceeds split between the Wallace family for medical expenses and FightSMA, an organization based in Richmond and dedicated to funding research for the disease.

“My best friend, her name’s Jen McQueeney, she just offered to do a 5K for us,” Taylor’s mother Valerie “Visha” Wallace said. “She works at a fitness club in the area and she’s managed a lot of races before.”

By Friday afternoon the race had already grown from last year’s turnout of 50 to 66 and still more registered on race day.

Besides money, the Wallace family hopes that the race raises awareness for a disease that is the leading inherited genetic killer of children under the age of 2 according to the organization Fight SMA.

“That’s one of the underlying benefits of this, to get the word out there,” Visha said. “I had never heard of it and it’s the number one inherited genetic killer of children 2 and under so you would think that you would know about it but everyone [who has it] is so little and it doesn’t pass into adulthood, so it isn’t well known.”

SMA causes weakness and wasting of the voluntary muscles in the arms and legs of infants and children. It is caused by an abnormal or missing survival motor neuron gene which is responsible for making the proteins that feed motor neurons. It can also affect the muscles that help in swallowing and breathing. Taylor was diagnosed with the disease in September 2006.

To read the full article and see pictures from the race, click here. Also, click here and select “Midlo 5 5.21.08″ to briefly meet Taylor and her dad Kenny. This year’s “Taylor’s Hope 5k for SMA,” which also included a kid’s run, drew more registrants than last and plans are already in the works for the third 5K to be held May 16, 2009.

Caring for a child with a disability or chronic condition, including spinal muscular atrophy, can be expensive and insurance does not cover all needs. According to the 2005/2006 National Survey of Children with Special Health Care Needs, 20% of families with a child with special health care needs pay $1,000 or more out-of-pocket in medical expenses per year for child.

The UnitedHealthcare Children’s Foundation (UHCCF) is doing something to help. UHCCF is offering grants to “provide financial relief for families who have children with medical needs not covered or not fully covered by their commercial health benefit plan,” according to the UHCCF website. The site also says:

Children who have medical needs are sometimes not insured comprehensively to provide coverage for all of their medical treatments. There are few places for families who have gaps in their commercial health benefit plan coverage to turn to for funding medically necessary services for their children. Children may go without necessary treatment, or, they receive the care and families assume a large amount of debt. The Foundation understands these needs and is willing to help fill this void.

To be eligible, applying families must meet a strict criteria. For all the details, visit http://www.uhccf.org.