Pursuing her dreams: Plainview Valedictorian receives #RAREis scholarship – The Ardmoreite
Earlier this spring, Riley Styers graduated top of her class at Plainview. Last fall she was drum major in their marching band, and she was a star for many years on their academic team. She also has a rare genetic disorder called Marfan Syndrome.
The disorder is caused by a mutation in a gene that controls how the body makes proteins and regulates growth. It affects roughly 200,000 people in the United States and about .01% of the population worldwide.
Styers said her father also had the condition and she was diagnosed a few months after she was born.
“In Marfan patients, their bodies do not produce enough protein, so this can lead to heart problems, vision problems, weak connective tissue, brittle bones and scoliosis,” Styers said. “Since their growth is not regulated correctly either, Marfan patients often have abnormally long limbs and fingers.
“I would say I have a milder case of Marfan’s because some Marfan patients cannot even walk or participate in physical activities. However, I want others to realize that people like me, who look healthy on the outside can still have a chronic disease.”
She shared a few ways that Marfan’s has impacted her life.
“Over the past year, my conditions have taken a turn for the worse,” she said. “I barely made it through marching band because, thanks to my weak bones, I got a stress fracture in my foot. However, I finished out the season in a boot because I was the drum major, and I didn’t want to let my band down.
“I’ve also been dealing with low blood pressure, which has been causing frequent migraines, severe dizziness, vertigo, muscle tremors, and brain fog. In other words, I felt like a zombie these past months, and I had to stop doing some of the activities I love, like riding horses.”
Marfan’s also contributed to the death of her father when Styers was still a little girl.
“My father was diagnosed with Marfan Syndrome a few years before I was born,” she said. “He worked on a ranch his whole life doing hard, physical labor, which was not good for his heart. When I was 10, he had open heart surgery. He spent several months in the hospital down in Texas, and my mom and I would spend hours driving to go see him. His health continued to decline, and he passed away.”
To this day Styers misses her father. She said her family and church have helped her deal with her grief over the years. She wanted to share her story as a way of honoring him and potentially helping others receive a life-saving diagnosis.
“While the average life expectancy for Marfan patients used to be only 40, it is now over 70, which is the national average,” she said. “If patients are diagnosed early and have a healthy lifestyle, they can live long, healthy lives.”
After the death of her father and many years of her own medical bills, Styers had little saved up for college. To help pay for her education, she searched for every scholarship that might be available to her. That’s when she found out about the #RAREis scholarship.
The scholarship is awarded to only 104 individuals with rare diseases and disorders every year, and recipients receive a one-time grant of $5,000 to pay for their education. Styers will be using the scholarship to attend Oklahoma State University this fall where she will be majoring in biosystems engineering.
Her health is also experiencing a turn for the better.
“I found a great cardiologist who specializes in Marfan’s down in Dallas, and I’m starting to feel like myself again,” Styers said.
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