The Benson family is an active bunch. Mom Charlotte and dad Craig regularly get outside with their two children, 15-year-old Christiane and 13-year-old Garland, to explore the Barton Creek Greenbelt, ride zip lines across Lake Travis, hike, snow ski and vacation at the beach. “We’re pretty outdoorsy,” says Garland.
If that sounds like many families you know, consider this: Christiane has Batten disease, a rare neurodegenerative condition that causes blindness and seizures. There is no cure, and at this point, no treatment is available. The disease hasn’t stopped the Austin High School student from wringing the most out of life. “Christiane is such a metaphor for who we are, because she’s so strong-willed and so determined. She’s small, but she’s mighty,” says Charlotte. “We are very much inspired by her can-do attitude and the fact that being blind hasn’t dampened her will and her spirit.”
That tenacity and fight has left its mark on her younger brother Garland, too. “She’s really brave,” he points out. “Whatever she’s able to do, she does.” From his earliest days, he’s taken part in Batten disease fundraisers like the family’s Run to the Sun event, an overnight relay from Enchanted Rock to Mount Bonnell. “The very first year, he actually ran the last leg with his dad,” Charlotte remembers.
So when the family’s foundation, Beyond Batten Disease, launched a campaign to raise $6 million to fund a treatment for Batten disease, Garland wanted in. He announced his own effort to raise $1 million. “It just came into my head to raise $1 million. I knew that was a reasonable goal,” he says. “My plan is to get 100,000 people to give $10 each. My ask on social media is for you to give $10 and tell 10 people, so it spreads.”
As of this writing, Garland has raised over $300,000, and the momentum is building. “I got a letter from the Starlight Fund that said they’re going to match every gift up to $150,000,” he says.
All this activity is working in the direction of delivering a treatment for Batten disease to the families who so desperately seek help. “Over the last ten years since we started the foundation, we’ve raised and invested over $19 million in Batten disease research funding,” says Charlotte. “We have put a lot of bang into the research world, and through the work they’ve done, they’ve discovered a treatment. So now we’re working on getting to the FDA for approval for clinical trials.”
The treatment is critical, because the heartbreaking truth is that Batten disease is fatal. And the timing of bringing a treatment to fruition is critical for the Benson family. “It is usually terminal by the early 20s,” says Charlotte. That fact is something the Benson family has faced since Christiane’s diagnosis at age 5.
“The first symptom Christiane had was, she was bringing books really close to her face, and she was sitting really close to the television,” Charlotte recalls. “We felt she needed a pair of glasses. And that one doctor’s appointment led to another, and we eventually got the diagnosis of Batten disease.”
It was important to Charlotte that both her children understand the disease in an open, honest way. “I really felt like I wanted to help her understand why she couldn’t do the same things other kids could do, in terms of things like picking out colors or catching a ball,” she says. “So I used that vision loss as a catalyst to tell her about her disease. And Garland, too. Garland was really young then, but we had a very open dialogue about it, because it is part of our family. It’s part of what we do. And our foundation is our family mission and something that we are invested in as a team.”
The Benson family mission has extended beyond Christiane’s situation to impact a broader community. “When we got Christiane’s diagnosis, they told us there were no treatments, there are no cures. Basically, there’s nothing you can do but go home and make her comfortable, which was a completely unacceptable answer for us,” Charlotte says. “We knew that we wanted to do something to not only give her hope, but all the kids who suffer from Batten disease.”
Garland wants to be sure everyone knows how to donate. “If you text the word ‘Hero’ to 501501, it bills your phone $10 through the Beyond Batten Disease Foundation, but if you want to give more, you can do that through beahero.beyondbatten.org,” he says.
His enthusiasm impresses his mom. “I love the fact that Garland has responded in the same way that we did, because he’s just becoming of the age where he realizes the gravity of it,” she says. “For him to come up with the idea makes me pleased that he’s empowering himself to be additive and do something positive in the face of a very challenging circumstance.”
That boldness of conviction shouldn’t surprise his mom, who leads by example. “I tell the kids that when the desire to do something trumps the fear of failure, be fearless,” Charlotte says.
By Sherida Mock
