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UNT student vying to give back in spite of fatal disease

UNT student vying to give back in spite of fatal disease

Courtesy - Huntington's Disease Society of America

UNT student vying to give back in spite of fatal disease
November 30
20:05 2016

For public relations junior Leah Barker, every day gets scarier. Instead of stressing about finals or making it to class on time, her worries are bigger. Barker stresses about how much longer she’ll have with her mom. She gets nervous about her future. She gets discouraged about the deadly disease that’s made its way through her family. She gets scared about what’s going to happen next, but she’s decided to try to make the best of it.

The Huntington’s Disease Society of America describes Huntington’s Disease as “a fatal genetic disorder that causes the progressive breakdown of nerve cells in the brain. It deteriorates a person’s physical and mental abilities during their prime working years and has no cure.”

Because of this, Barker, 24, is crowdfunding money to take her mother, Anna Capp, traveling around the world before the symptoms of Anna’s Huntington’s Disease take over her mind and her body. Barker’s GoFundMe page, “Moving Mountains for Mama,” was launched early November.

Leah’s grandfather died of HD, both she and her mother have it and her younger sister, Courtney, is at risk of developing it.

“I understood something was wrong with my mom and I knew she was struggling,” Leah said. “I became very self-aware at a very young age.”

If a parent has HD, that parent’s children have a 50 percent chance of inheriting the disease. Around 30,000 Americans show symptoms of HD and over 200,000 are at risk of inheriting it, according to the Huntington’s Disease Society of America’s website, As of now, there is no cure and minimal treatment for HD.

“I started having some extreme mental problems within myself that I kind of wanted something to blame,” she said. “I didn’t just want to be crazy, so I went and got tested.”

The disease is a genetic disorder – a mutation in one’s DNA shows the whether or not one has inherited the disease.

According to Predictive Testing for Huntington Disease, “the gene causing HD has been shown to have a region in which three of the bases (CAG) are repeated many times. A normal gene contains 35 or fewer CAG repeats, while the Huntington disease-causing version has 36 or more repeats. A gene with 36–39 repeats falls into a ‘reduced penetrance’ (RP) range, which may or may not be associated with the onset of HD symptoms.”

Two years ago, Leah got tested for HD. The results revealed that her CAG repeats were at 43. She will progressively develop HD in her coming years, losing portions of both mental and physical capabilities.

From a young age, Leah said she was told by her family that only males could get it “so that [she] wouldn’t be scared.” Being that she and her sister were raised by their single mother, times were tough and they had plenty to worry about without having to think about HD.

“I remember crying because I was so thankful for my mom and the things she did for us,” Leah said.

Courtesy | GoFundMe

Courtesy | GoFundMe – Moving Mountains For Mama

But as her mom develops harsher symptoms and while Leah has been tested and diagnosed with the disease, this is the reality they live in. Anna’s symptoms will only worsen, alongside Leah’s. The two of them, together, will have to continue living knowing that their symptoms will get no better and their disease will eventually take over their lives.

“It’s really, really hard to sit and watch somebody that you love at such a young age, she’s only 46, forget who you are, forget normal daily things,” she said. “Basically you have to watch the one that you love turn into somebody different, both mentally and physically.”

Leah said her project, “Moving Mountains for Mama,” is her way to give back to her mother for single-handedly raising her and her sister to be what they are today.

“I want to see her happy more than anything,” she said. “I want to surprise her for once.”

Courtney Barker, Leah’s 22 year old sister living in Denton, spoke highly of her mother and of her sister’s goals to give back, even in the face of such a destructive disease. Though she herself has not been tested, she has a 50/50 chance of developing symptoms and says she still struggles daily with heavy anxiety, which could be an early sign of HD. She shared perspective on growing up and losing her grandfather to the disease.

“As a child, seeing my grandpa continuously twitch and turn super, super thin – it really frightened me,” Courtney said. “It’s something you don’t really describe, it’s something you have to see for yourself. “

Uncontrollable twitching is another symptom of HD, often causing patients to burn a lot of extra calories and lose weight. Eventually, most HD patients will need a caregiver to help maintain their own health, as they themselves will lose the ability to do so.

“I don’t think people are aware of the fact that Huntington’s Disease affects your whole entire life, not just when you’re older,” Courtney said. “You are automatically different in the head because of Huntington’s Disease.”

Now that her mother and her sister both have HD, she sees “Moving Mountains for Mama” as a chance to give something back. Even though her mother will not be the same in the years to come, they now have an opportunity to show her the world, or at least some of it, while she still has some of her health left.

“Our mom, literally our whole entire life, she has taught us how to love unconditionally and not just for us as her daughters, but for everyone else around her,” Courtney said. “She has been the first person to give, she has been the first person to make somebody smile.”

Featured Image: Courtesy | Huntington’s Disease Society of America

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Kyle Martin

Kyle Martin

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