WAXHAW – A sophomore at Marvin Ridge High School is organizing a 5K to raise money and awareness for a rare disease as part of her Girl Scout Gold Award project.
Carolyn Szempruch, 16, created the run, called Race4Rett, to benefit Rett syndrome – a neurological disorder found primarily in females. It impairs hand usage, speech and daily life such as being able to eat, bathe or use the restroom independently. Estimates suggest Rett syndrome occurs in one out of every 10,000 to 15,000 girls born and affects 1 in 10,000 to 22,000 females in the U.S.
Carolyn’s aunt Carrie, who lives in Ohio, has struggled with Rett her entire life.
“She can’t talk with us. She can understand us, she hears us, but she can only make noises, not words,” Carolyn said. “She physically gets older, but it’s like she’s permanently a child. My grandparents have to bathe her and she wears diapers, but she’s lucky because she can walk and most girls with Rett can’t walk.”
The run begins at 8 a.m. April 21 at Kids R Kids Academy at Blakeney. The second mile will be run in silence as a way to relate to kids with Rett syndrome, since most are non-verbal.
Registration costs $30, but will increase to $35 on April 1 and then $40 on race day. Those who want to give to the cause but not participate in the run can sign up to be “spirit runners” for $25.
Proceeds will be used to cover the cost of the event and purchase iPads with an app called Proloquo2Go to help children with Rett communicate with their parents and caregivers. Carolyn is hoping to buy as many as 10 iPads.
She said the project hasn’t been easy, but it’s taught her the importance of determination and perseverance. In the end, she knows all the hard work will be worth it.
“I’ll be able to see the impact on my aunt, and other parents will be able to talk to their kids, so it just makes you feel really good inside,” she said. “Once my aunt gets one of the iPads and I’m able to talk to her, probably just ‘How are you doing?’ is going to be the first question I ask.”
Want to participate?
The race starts at 8 a.m. April 21 at Kids R Kids Academy at Blakeney, 6250 Blakeney Drive, Charlotte. Visit www.race4rett.racesonline.com to register to run, donate to the cause, sign up to volunteer or become a business sponsor.