When his parents set out to raise $6 million in two years to fund a Food and Drug Administration clinical trial for a possible treatment for Batten disease, Garland Benson, 13, decided he was going to raise $1 million of that to help find a treatment for his sister, Christiane. He would do it, he decided, by asking 100,000 people to give $10.
“One day I was like, this takes $6 million. That’s a lot. It’s too much for me to ask for. Let’s start at a million,” he says. “If I can raise $1 million, everyone else can come up with $5 million.”
Everyone else has raised $3.3 million since September 2016 for Beyond Batten Disease Foundation’s Be Project. “They’ve been doing a pretty good job,” Garland says. He’s raised $169,000 for his Be a Hero project. People donate through his website page on BeyondBatten.org or by texting “Hero” to 501501.
He’s had donations from as far away as France. Friends and family have shared it with their friends and family. He and his friends at Hyde Park Middle School have formed a group called Brothers for Batten, which raises money through events including an upcoming garage sale.
“We found a treatment,” he says. “We just need to fund it. It will help a lot. Maybe after that, we could try to find a cure. We haven’t gotten that far yet.”
Christiane was 5 when she was diagnosed, 10 years ago. Batten disease is a rare genetic disease in which both parents are carriers of a genetic mutation. It’s a disease in which the lipopigments, which are made of fat and protein, build up in the brain and the person doesn’t have the ability to clear the cells of them. It causes kids to become clumsy, and then become blind, have seizures and become developmentally delayed. In Christiane’s type, the life expectancy is sometime in late teens, early 20s.
His sister, Garland says, really loves skiing and playing golf. She loves cooking and painting and “Harry Potter,” both the books and the movies. She loves to walk her dogs.
“Her personality is so determined,” mother Charlotte Benson says. “She’s so strong-willed. She does not quit trying.”
She is now almost blind and has seizures.
Her parents were told there was nothing they could do when she was diagnosed. There were no treatments. They were told to go home and make their child comfortable.
“This is one of those rare orphan diseases that falls into the abyss,” father Craig Benson says. There wasn’t the funding or attention for research to be done.
The Bensons weren’t going to accept that. “We’ve got to do something to change this,” Charlotte Benson said.
At the time of her diagnosis, Craig Benson was the CEO of Rules Based Medicine, a life science diagnostic company. He had connections to the pharmaceutical industry and to researchers.
They founded the nonprofit Beyond Batten Disease Foundation and hired a chief science officer. They began raising money to start doing research into Batten disease and partnered with other foundations for similar diseases such as Parkinson’s and Alzheimer’s that had more funding and more publicity. Because Batten disease didn’t have a lot of dollars or energy going toward it, they had to start from the beginning.
“We found ourselves as the global quarterbacks,” Craig Benson says. “We had to fund the tools to be able to allow research.”
They found neurologist Dr. Huda Zoghbi, who knew some Italian researchers who had promising treatment possibilities, at Texas Children’s Hospital. Beyond Batten funded bringing those researchers to Houston to work with Zoghbi.
The proposed treatment is two components: one, an oral medicine, and the other, a food additive that is given in an IV injection. It’s not a cure, but they believe it could delay the progression.
The Garlands have accepted that their daughter may not live beyond her 20s. They believe, though, that they “were the right people at the right time” to create a change in the treatment for Batten. Charlotte Benson remembers a fellow Batten parent coming up to Craig Benson at a conference after they first formed the foundation. “She said, ‘We’ve been praying for you. We’ve been praying that someone would come along that could do something to help this disease,’” Charlotte Benson says.
One of those right people is son Garland. “I’m so glad for him that he, like us, can feel like he’s doing something,” Charlotte Benson says. “He’s just naturally a sweet kid.”
For Garland, he wants to raise $1 million and believes he can. After that, he plans on joining the NBA, or opening up the next Cabela’s, or investing in the oil and gas industry, or possibly become an architect. He’s got time. He just turned 13.