Strides for Sarah helps kids with genetic disorder

When Sarah Epperson was an infant, parents Rachel and Lee Epperson noticed that her eyes jiggled when they buckled her into her car seat.

They took her to an ophthalmologist who told them that the lenses in Sarah’s eyes were loose and that the condition was a predominant marker for Marfan syndrome, a life-threatening genetic disorder affecting the body’s connective tissue. There is no test for the disorder, so doctors monitored her for other symptoms.

Two of the most commonly impacted organs are the eyes and the heart. When they took her to a cardiologist, they found that her aorta was enlarged. With those two criteria met, Sarah was diagnosed with Marfan syndrome at age three.

Marfan syndrome affects 1 in 5,000 people and is equally distributed among races and sexes. Isaiah Austin, former Baylor basketball player, pulled out of the NBA draft this summer after being diagnosed with the disorder.

“More people have it than know it,” Rachel Epperson said. “If people know the signs, they can get help.”

Those with the condition tend to be tall and slender, with long arms, legs and fingers. They often have a curved spine, flat feet, flexible joints and crowded teeth.

Sarah, now 9, is on heart medicine and had the lenses in her eyes removed because she could see better without them by using glasses, Rachel Epperson said. When her eyes stop growing, she can have surgery to have artificial lenses implanted.

She was also slated to have heart surgery, but doctors changed the dosage on a medication that allowed her to avoid surgery for now.

They found the medication from a clinical trial through the Marfan Foundation. Every year, the organization has a family conference where those with the disorder can get consultations with medical experts. Once families pay the conference fee, the appointments with doctors are available at no additional cost.

Because of the challenge of raising funds to travel to and attend the conference, the Eppersons decided to start Strides for Sarah 5K Run and 1 Mile Walk five years ago while living in San Antonio. With help from the Marfan Foundation, they have organized the event every year since then. After they moved to the Keller-far north Fort Worth area, they decided to bring the walk to Keller, too. Proceeds go to help families take children with Marfan syndrome to the annual conference.

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Ongoing monitoring and proper treatment can help those with the disorder live long, full lives, according to the Marfan Foundation.

Sarah is currently in the third grade at Independence Elementary and enjoys playing violin, piano, baking and walking her dog. Because of the condition, she can’t play sports, Rachel Epperson said.

The Sixth Annual Strides for Sarah 5K Run and 1 Mile Walk will be at 8 a.m. Nov. 1 behind Keller Town Hall, 1100 Bear Creek Pkwy. Online registration is available at at a cost of $20 for the walk and $30 for the run. Race day registration and check in begin at 7 a.m. and cost $25 for the walk and $35 for the run. A limited number of t-shirts are available.

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