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 last March 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 Sept. 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 by doing different things 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.”
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.”
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 developmental delayed. In Christiane’s type, the life expectancy is sometime in late teens, early 20s.
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.
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 in 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 at Texas Children’s Hospital, who knew some Italian researchers, who had promising treatment possibilities. 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.
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.