AUSTIN (KXAN) — As teenagers, the Benson siblings have been through experiences many kids their age never face. Christiane, 15, and Garland, 13, go skiing, play sports and run around the backyard with the two family dogs. Their family time is a little different.
Christiane has battled Batten Disease for nearly 10 years. Roughly three out of 100,000 people in the United States face the fatal neurological disorder. It causes blindness, seizures, and increased cognitive impairment, according to the National Institute of Neurological Disorders and Stroke.
Most people diagnosed do not survive past their teens or twenties. The Bensons formed the Beyond Batten Disease Foundation in 2008, working to research treatment options. After years of hard work, a group of doctors and scientists developed a treatment that could slow down the effects of the disease.
“We found it, we just need to fund it,” Garland said about the treatment, which needs $6 million before the scientists will be ready to submit it to the Federal Drug Administration. FDA approval would allow clinical trials to begin, giving Christiane a chance at a longer life.
Garland is determined not to sit on the sidelines while his sister suffers. His summer lemonade stands turned into charity, and school projects turned into fundraisers. In April, Garland launched campaign dubbed “Be a Hero.”
“It’s $1 million that I’m going to raise by myself,” he said. “My original goal was to get 100,000 people to give $10 each, that’s just a way easier way, and I can do that by spreading it on social media, getting people to donate $10 until 10 people and then keep going like that and eventually I’ll get there.”
For his recent December birthday and Christmas wish, Garland has asked that people donate $10, and ask someone else to do the same.
In eight months, he raised $200,000. “To get that much is just incredible,” Garland said.
Batten is genetic, though Garland does not have it, and he is not a carrier, so he would not be able to pass it to his future children.
Charlotte Benson, Christiane and Garland’s mother, and one of the founders of the Beyond Batten Disease Foundation, said fighting the disorder with her family is like “running down a hill with an avalanche chasing you.”
“What is so inspiring for us is that [Christiane] is very strong willed, she’s very determined, and she never has let having Batten Disease stand in the way of doing exactly what she believes she can do,” Charlotte added.
Christiane continues to push past challenges, by joining her family on ski trips and going horseback-riding. She is also a cheerleader at her school. Charlotte said she was proud of her kids for their commitment to fighting Batten and supporting each other.
“When we first started the foundation, there was this immediate instinctive response to try to do something to help change the trajectory of this horrible disease,” Charlotte explained. “I’m very grateful that Garland too has responded in the same way because I think it also gives him the opportunity to help, and not only help Christiane, but to try to help make the world a better place.”
“Anytime you’re faced with adversity and in this case devastation you have a choice, you can choose to do something positive and take a bad situation and try to change it into something good or you can be defeated,” Charlotte added.
Garland said one of the reasons he wants to help is he thinks people would want to help him.
“That’s really nice and all I can really ask for,” Garland said.
To fulfill Garland’s $1 million Be a Hero campaign goal, people can text “hero” to 501501. To check the progress of Garland’s donations to help Christiane, click here.