MOREHEAD Studying biomedicine at the prestigious and rigorous Craft Academy at Morehead State University, mapping out a career that will take her through medical school to be a physician, and studying to take the ACT test for the umpteenth time in hopes of improving her score another few points don’t leave Katelyn Collins much time left to feel sorry for herself.
She could certainly claim grounds for despondency, considering she has suffered from birth from a rare and incurable kidney disease, one that afflicts others in her family and can only be alleviated if she gets a transplant.
Collins has Alport Syndrome, a rare genetic condition that causes decline in kidney function and can result in severe hearing and vision problems, according to a spokesman for the Alport Syndrome Foundation.
Most Alport patients require dialysis or a kidney transplant between their teens and early adulthood, according to the spokesman.
However, self-pity is not part of Collins’s personality, say her parents and others who know her. “She was just remarkable and full of life” as a Russell High School freshman, said Ruthie Lynd, who was her physical education teacher that year. “She did a report on her disease, and it was the first I knew of it. I’d have never known she had it otherwise.”
“She doesn’t see it as a limiting factor in her life at all. If anything, it’s driven her to pursue her studies and go into the medical field,” said her father, Patrick Collins.
The foundation is as impressed with Collins as her parents and teachers. It has presented her one of its Paul Silver Enrichment Awards, which it confers annually to young people with the disease to achieve their goals.
Collins, 16, has had plenty of time to research her condition. She has had it since birth. So has her brother Hunter, who is just a year younger. Her 7-year-old sister Harper has it too, and also her mother, Amanda Liles, who had a kidney transplant five years ago and is healthier now.
The disease is passed down through the maternal line, and has afflicted other relatives on that side of her family
Collins has not reached the stage where a transplant is an urgent need. The main symptom she has dealt with is minor hearing loss.
She travels for treatment about twice a year with her brother to a pediatric nephrologist — a kidney specialist. Since early childhood both have had to monitor closely their blood pressure and undergo frequent drawing of blood for testing.
Rather than drive her to despair or depression, her affliction and research have led her to an academic path — medical school and a career as a pediatric nephrologist.
She also is a vocal advocate for Donate Life, the non-profit organization devoted to organ donation awareness and registration.
“People have a lot of false impressions about organ donation that need to be corrected, and I think I can offer that,” Collins said.
She has worked registration drives for the organization and does it with her siblings in mind, particularly Hunter.
The two are close in the way siblings are who share a common burden. “They give each other a hard time, but they’re best friends. They look out for each other,” Liles said. “She’s probably more frightened for her brother than herself. She’s the kind of person who looks out for everybody before herself.”
Paul Silver Award recipients are chosen by a foundation committee. “The committee was very impressed by her work with Donate Life, her prior fundraising efforts, and her desire to raise kidney disease awareness at the local level, all while excelling academically,” the spokesman said.
The award brings with it a $1,000 stipend; precisely how it is used is up to the recipient. However, recipients are required to submit a report documenting the impact the award has had on their life and education.
Collins will use hers to finance a trip with other Craft Academy students to the United Nations headquarters in New York this spring.
While there, she will do the usual civic-education activities, but hopes to apply the experience to her interest in Donate Life. “I’d like to see if there is any way I can spread the word about organ donation,” she said.
That is a plan that meshes with her mindset, according to Regina Rice, another of her RHS teachers. “She’ll take whatever happens to her and turn it into something she can do to learn from, anything she can use to help someone else.”
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