Taber Elam with his mom, Jessica, and her partner Cody Martin
JOURNEY TO FA DIAGNOSIS
Eighth grader Taber Elam has had quite a journey since 5th grade, when kids started making fun of how he walked. He also recalls noticing how he started struggling with his fine motor skills, especially when trying to pick up small Lego pieces. But it wasn’t until undergoing a physical for camp that a heart murmur was discovered followed with a diagnosis of hypertrophic cardiomyopathy (HCM). Taber and his mom, Jessica, found out much later this is one of the biggest indicators of Friedreich’s ataxia (FA).
Because HCM, as it tends to do, had weakened Taber, his doctor referred him to physical therapy and occupational therapy before considering next steps. After a year of very little progress, a heart that became more enlarged, and chest pains, Taber underwent open heart surgery December 7, 2019, in St Louis due to a lack of pediatric heart specialists in the Tulsa area. This was the first time Jessica and Taber had been told that HCM was usually caused by an underlying genetic disease. Because of insurance denials and neurologists who wanted to keep working on Taber’s weakness, it took a year and half, until April 2021, before Taber was diagnosed with FA by a local Tulsa neurologist.
Jessica learned all she could about FA through Internet searches. Within a very short time period, she found FA resources and patient registries through the Friedreich’s Ataxia Research Alliance (FARA), Dr. Lynch, a Philadelphia neurologist, and the Gehr family, founders of the Oklahoma City-area Cure FA Soirée. A month later, Taber, Jessica and her partner Cody attended their first Soirée. This past year, they volunteered for the first time as part of the Soiree planning committee and are back again for this year’s Soiree.
How has the FA diagnosis affected The Elams?
Jessica works hard at trying to live their lives the best way they can. She helps Taber keep a positive outlook, trying to keep things normal in daily life activities and hanging out with friends. But it can be draining with so many appointments with different specialists and therapists. Also, Taber is finishing 8th grade at home for several reasons. As Jessica states, “FA has made life not necessarily harder but it has definitely made life different.”
TABER’s INTERESTS
Taber really enjoys listening to music featuring a variety of instruments, especially trumpet and piano. He loves pop music with good beats, such as AJR, Weezer, and Bruno Mars. Taber also shared with me that he likes to sing, although he keeps that private. Like many of us, he enjoys Netflix originals, especially action shows, and lately, he has been on a thriller kick. But let’s not forget about the activity of choice for teens: playing video games like Fortnite and Overwatch via Xbox or Oculus virtual reality (VR).
Taber did add that one of his favorite subjects at school is Science, like physics and astronomy, especially because of his teacher.
TABER’S PLANS
Working at Sonic when he turns 16 and later opening an animal shelter focused more on dogs and maybe cats are some of Taber’s plans for the future. His family has a Lhasa Apso, not his favorite kind of dog…more mom’s dog. When he can own his own dog, he’d like a pit bull, a German shepherd or a golden retriever.
FAVORITE QUOTE
“Mornings are for coffee and contemplation.” (Although Taber admits he’s not a morning person.) ~ from the Netflix show Stranger Things