When teens ask for money, it's normally for gas or to go to a movie. But when Garland Benson, a 14-year-old in Austin, Texas, asks for money, it's to help his sister, Christiane.
Garland is trying to raise $1 million to help cover the cost of starting a clinical trail to develop a treatment for Batten disease, a neurological condition that can cause blindness, seizures and cognitive impairment. Christiane was diagnosed with the disease at age 5. She's now 15, and as you can see and hear in the video above, she has an able ambassador in her younger brother.
"It's $1 million that I'm going to raise by myself," Garland told KXAN in 2017. "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."
A family effort
Garland and Christiane's parents, Charlotte and Craig, started the Beyond Batten Disease Foundation in 2008 in the hopes of funding a clinical trail for treatments that may slow the progress of Batten. Researchers need $6 million to get the trials underway, along with approval from the Food and Drug Administration.
There's currently no cure for Batten.
Garland's $1 million drive, dubbed "Be a Hero!", started in February 2017 and he has nearly reached his goal. As of publication, Garland has raised $869,525.
It's not just the charitable nature of others that Garland relies on, either. He has used lemonade stands, school projects and even a school-based group of brothers — called Brothers for Batten — who do things like garage sales to raise the money.
While Batten disease is genetic, Garland doesn't have the disease, nor is he a carrier, so he won't pass it on to his children, should he have any.
But Christiane, who is now blind and has seizures, hasn't allowed Batten to keep her from experiencing life. She still goes skiing with her family, rides horses and is a part of her school's cheerleading squad. Mom Charlotte is proud of both her kids for doing what they can to help each other and others with Batten.
"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 told KXAN. "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."
You can help Garland achieve his goal by visiting the "Be a Hero!" link above or by texting "hero" to 501501.