by Sara Page, MidlothianExchange.com

View Photo Gallery

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.

The family first noticed around the age of 6 months that Taylor wasn’t sitting or crawling. Doctors attributed it to a hypertonic state, meaning her muscles were simply a little less developed, but after two months of physical therapy showed few results, she was sent to a pediatric neurologist who did a blood test. A month later the family got the call.

“You know, I guess there are two avenues. You can be totally depressed and devastated and do nothing about it or you can look at it as ‘OK what can I do to help her’ and kind of go the other avenue and do the research and all that,” Visha said.

Taylor currently sees Dr. Kathryn Swoboda about once every six months. Swoboda heads the Pediatric Motor Disorders Research program at the University of Utah and sees patients at the Primary Children’s Medical Center in Salt Lake City. As one of Swoboda’s patients, Taylor is part of a clinical trial involving valproic acid and sodium phenylbutyrate, two drugs which have shown promise in stopping the progression of SMA.

Meanwhile Taylor starts school at Woodlake United Methodist Preschool in the fall and is nearly unstoppable in her specially equipped, motorized wheelchair which she can take on-road or off.

“Taylor has got to be the happiest child I have probably ever seen,” her father, Kenny Wallace said. “She doesn’t complain, she loves to get in her wheelchair and go … She really is happy all the time unless she’s hurt or sick.

“We’re very blessed that Taylor is two-and-a-half and she’ll be three in August,” he added. “They also say for research that if they find a cure for SMA, it’ll help cure around 40 other diseases.”

Read more about SMA and ongoing research at www.fightsma.org. To read more about the Wallace family and their efforts visit www.ourthreegirls.com.