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“ I believe God gives His hardest battles to His strongest soldiers. We have to fight on—even on the bad days."”
“Hi, Sarah Taite,” “Good to see you Sarah Taite,” calls a group of friends as she ambles down the corridor of Lowder Hall with her honey blond hair swinging from shoulder to shoulder. Her bright sea green eyes sparkle as she returns their greetings with a warm smile that reveals perfect orthodontic work.
Sarah Taite Kelly, a junior in Supply Chain Management at the Harbert College of Business who doubles as a student employee in the Office of Academic Affairs in Lowder Hall, appears to defy gravity as her body sways from side-to-side carrying a huge book bag strapped to her shoulders, while moving with an unusual gait.
Sarah Taite is a competitor and was once gifted with an athletic ability that made her a team leader. “I’ve always enjoyed sports and give it my all,” she said. At the age of 12, she noticed a little lost flexibility in her foot and later found it difficult to do a sit-up. It was during a basketball game when it became obvious that something was wrong.
A few weeks later, during a practice session as she and teammates were performing drills, she found herself struggling trying to keep up with her team and ultimately could not complete the drills. “I couldn’t believe that my body would not allow me to push through and my feet would not obey my mind,” she said. Her father, Kevin Kelly, who was an assistant coach, also noticed that the once agile athlete was struggling. At that moment, we knew something was terribly wrong.
The long dark journey of investigative work began with visits to various doctors and ultimately with a team of specialists from the Children’s Hospital of Alabama in Birmingham. “Then began more probes, X-rays, lab work, you name it,” says Sarah Taite. As her family stood by her bedside, the neurologist told them the devastating words, “Facioscapulohumeral Muscular Dystrophy (FSH or FSHD). “At the time, it was as if the world went silent,” she softly shares. After a few weeks of morose and self-admitted indulgence of, “Why me, Lord,” her competitive spirit kicked in, she thankfully acknowledges.
Since that time, she has been in and out of the Children’s Hospital for various therapies and a major surgery. Compared to some of the FSH patients, Sarah Taite is lucky she is still ambulatory. “Most patients are wheelchair bound,” she sighed.
Although FSHD is a genetic muscle disorder, there is no prior history in her family. Presently both brother and sister appear to be FSHD free. In her case, the weakness is in her shoulder muscles, upper arms, legs and stomach muscles.
There are 30 types of muscular dystrophy and many share similar symptoms, but all are characterized by weakness in the voluntary muscles that control movement. The patient becomes less flexible over time. In FSHD cases, it is believed that there is a genetic flaw that leads to a skewed delivery of the protein gene (DUX4) on chromosome 4. Although it is not part of a particular gene, it is believed to interfere with the correct processing of DNA. In her case, one-half of chromosome 4 is missing.
“I love to wear my hair in a ponytail, but that is one of the most difficult tasks I can perform," she said. "It is an arduous challenge to put my hair up because my shoulders are weak, and I have difficulty reaching over my head since I lack full range motion. You have no idea how frustrating such a simple task can be,” she wistfully shares.
FSHD causes a condition known as lordosis, which is an exaggerated curve in the lumbar region of the lower spine resulting in spinal alignment problems. The misalignment also causes the stomach to extend out.
“People think I am pregnant,” she laughs while shaking her head in disbelief. “I remember in my early teens, my friends and I decided to go Trick or Treating as, 'The 80s workout girls' —think, Olivia Newton John, Jane Fonda, and Cindy Crawford," she laughs. "We donned our colorful leotards, bulky leg warmers, big hair with sweat head bands and set about to get our treats with bright gym bags in tow. As we knocked on the doors, we were asked about our costume theme and then they would invariably ask, 'Oh, who is the cute pregnant workout girl?' Yes, that hurt."
When Sarah Taite was in the seventh grade, her orthopedists performed surgery in an effort at keeping her body mobile and flexible and attempting to improve her balance. As part of the procedure, they removed bone from her inner hip and transplanted it to her glenoid cavity scapular (shoulders) and the glenohumeral joint, and then fused to her thoracic cage (rib). It was a long, painful recovery,” she whispered. Even today, every six months is a return trip to the Children’s Hospital for more rounds of lab work, genetic and neurological testing, X-rays, orthopedic consultations, physical therapy, and pathologists, all to keep her healthy and to aid on-going research. Despite advanced research and technology, this disease still remains much of a mystery today.
Another side effect of FSHD is pain and inflammation of muscles, which requires her to follow a healthful diet and to take anti-inflammatory medications. Physical therapy, which is painful and difficult to do along with weight bearing exercises, is another part of her regime; this works to keep muscles flexible and muscle atrophy at bay.
“Sarah Taite is an out-going, vibrant young lady. She brightens my day every time we meet – because she is an excellent communicator who is always positive, and ready to offer a smile,” agrees Marcia Gibson, Coordinator, Supply Chain Management Professional Experience Program.”
Sarah Taite has not allowed FSHD to slow her down. She prides herself on independence and is a licensed driver with no operational restrictions or vehicle assistance configurations. She has been lucky in that she has not experienced bullying. On the other hand, she confides that she was appalled when a person bluntly inquired, “When is your baby due?” Stunned by the insensitivity of the question, she quickly brushed him aside with an emphatic, “Your education is zero.”
She then leans in and shares that it is she who has to make people feel comfortable with her disability. It is much like those who suffer personal grief and confronted by well-meaning people who don’t know what to do or say.
Faith guides her path
One of Sarah Taite's biggest fears is falling, since her center of balance is off. “I find myself watching people’s feet so as to avoid them running into me,” she said. She tilts her golden head and then with a long pause reflected, “At first, I was angry at God as to why I had to have FSHD, but my faith in Him keeps me rooted. I believe God gives His hardest battles to his strongest soldiers. We have to fight on—even on the bad days. I draw on the scripture, “In all your ways acknowledge Him, and he will direct your paths. “
Her zest for life makes her a popular sister in her Chi Omega Sorority, Alpha Beta Chapter. “She knows everyone—when we go out it seems every few steps we have to stop so she can talk with them,” laughs, Bryn Van Hoosier, (AU, Supply Chain Management major) and fellow Chi Omega sister, from Dallas, Texas.
“Sarah Taite is an out-going, vibrant young lady. She brightens my day every time we meet – because she is an excellent communicator who is always positive, and ready to offer a smile,” agrees Marcia Gibson, Coordinator, Supply Chain Management Professional Experience Program.
Smiling, she recalls bid day, hearing her name announced and feeling nothing but pure joy! “I knew they were accepting the total me -- just as I am,” she said. “Every day, I choose to be happy—it my personal choice to be happy and not sad.”
Sarah Taite is on path forward with a beautiful and determined spirit that is not afraid.