DALLAS — One year ago, 13-year-old Natalie Newman could walk and run with no problems.
She could talk without slurring her speech.
She could hold her toothbrush without dropping it.
What a difference a year makes.
Natalie went to the hospital for spinal meningitis, and after a battery of tests at Children's Medical Center Dallas, doctors discovered she had a rare disease called Friedreich's ataxia, or FA.
"It's a neuromuscular disorder where there's no connection between the brain and her nerves," explained Donna Newman, the girl's mother. "She knows she is standing, but her brain does not communicate with her muscles."
The disease eventually causes muscles to atrophy or deteriorate.
The teenager from Mabank is feeling the effects. "It makes me feel like I'll trip every step I take," Natalie said.
So, she takes it one paint stroke at a time, the one joy she can still do, even though she can no longer write.
We watched Natalie take her brush and dip into watercolors with the help of an art instructor. The teen has sold $6,000 worth of paintings and donated it all to research.
"I hope I can help find a cure," she said. "I mean, I also like painting, but I know when I sell it, it will go to a good cause."
Fundraising to fight FA is Natalie's mission. She doesn't feel sorry for herself, explaining that she gets around the best she can, most of the time in a wheelchair.
"It's frustrating," she admitted. "I can't run at all without falling down."
Walking even a short distance is now just too tiring for Natalie. "My scoliosis is pressing on my lungs, and so it runs my energy down very fast."
Scoliosis is just one of the debilitating side effects of FA. The disease also caused her to develop a complication that causes thickening of the heart.
It turns out that being clumsy and falling down a lot when she was younger were symptoms of the disease, too.
"It's very frustrating when I try to carry a gallon of milk to the cats," Natalie said. She cannot keep a steady hand and often spills the milk. But she maintains a deep religious faith.
"I know God made me the way I am, so I can be a witness to other people," she said.
Natalie has spent a lot of time in the hospital, which is why visiting other children with FA comes naturally. Taking them gifts — jewelry she makes herself with the help of her best friend — shows them that life goes on... but it's not easy.
"The toughest thing is getting the diagnosis that your young child might die at an early age," Donna Newman said. "But she knows her days are not numbered by doctors, but by God."
Natalie's mom is teaching her daughter to stay positive and keep the faith.
"They say I may not live past my 20s and 30s, and I hope I prove them wrong," Natalie said.
She's proving to be an example to her three younger siblings, who are carriers of Friedreich's ataxia. The parents had no idea they were carriers.
One in 50,000 people have FA. There is a Ride Ataxia bike event in Denton on Saturday, March 24, starting at the University of North Texas campus. To donate money for research For more information about the disease and to donate money for research, visit the Friedreich's Ataxia Research Alliance Web site.