GAINESVILLE, Fla (WCJB) -- Harper Youmans has Rett Syndrome, a rare genetic disorder that has severe impacts on a child’s life, including his or her communication skills.
Her mom, Leslie Youmans, thought long and hard when Harper was granted a wish from the Make-A-Wish Foundation.
“What is the most important thing to give Harper, what would have the best impact," she asked. "A voice, I mean what is more important than having a voice?”
Today was the first day of training for some Newberry Elementary School teachers to learn how to communicate with Harper on her new eye gaze device.
"If by doing this she is able to tell us ‘hey, I really wish you would have just chosen a Disney cruise,' we’re going to take her on that cruise somehow,” she said.
The device allows Harper to look at a button and have the machine say exactly what she is looking at.
Rett University Coach Kourtney Barnum said people with Rett Syndrome are often misunderstood.
"What we’re finding, especially with our girls with Rett syndrome that for many years, the expectation was that they couldn’t learn and they weren’t smart and that they’re intellectually disabled," she said. "What we’re now finding out because of eye game technology is that our girls and boys are actually very, very smart."
But, today isn’t just a celebration.
"Harper’s best friend passed away last week and services her today and he was one of the big reasons that we wanted the staff to have the training because he had a condition where he was also nonverbal but would have benefited so much from this so its a little bittersweet today, but we’re gonna keep going in honor of Brian, aren’t we bud?”
It's that kind of perseverance that fuels Harper and her family.
"We do out best to live every day in the moment and appreciate everything we took for granted before, so, that’s life with Harper," Youmans said.