By Chris O’Connell in Alcalde
Published April 22, 2014
Christiane Benson is like any other 11-year-old. She likes cooking scrambled eggs, playing the piano, and running around outside with her younger brother Garland and their dogs. But when it comes time to read, Garland has to narrate the books .
In 2008, when she was five-years-old, Christiane was diagnosed with Batten disease and has since lost much of her vision. The rare neurodegenerative disease is also known to cause mental decline, loss of speech, seizures, and eventually, death, with no known cure. Soon after her diagnosis, her parents Craig and Charlotte founded the Beyond Batten Disease Foundation on the tenets of diagnosis, fundraising, treatment, and eventually finding a cure. The Foundation’s website refers to families’ struggles with Batten disease as, “quite literally a race against time.”
“I get to see Christiane every third day,” Larry Chauvin says, his grin audible through the phone. “It’s cool.”
Chauvin, BS ’03, is a physical education teacher at Casis Elementary, where Christiane Benson is in 5th grade. He is also team captain of a running group participating in a relay this weekend benefitting Beyond Batten, called Run to the Sun, a 90-mile race starting at Enchanted Rock around dusk, and ending at dawn at Murchison Middle School in Austin. That group has grown from eight members to 25 in less than four years, and includes numerous Texas Exes in its ranks.
His co-captain, Sheri Bryant, BS ’03, ME ’10, also has a close personal connection to Christiane. She met the Bensons at a parent-teacher meeting at Casis, where Bryant taught kindergarten at the time. She learned of Christiane’s story and thought immediately, “She has to be in my class; I have a connection with the family.” She still tutors Christiane twice a week, and she and Chauvin will be running in their fourth Run to the Sun relay, having participated in the annual race every year.
While many Texas Exes have joined Bryant and Chauvin—as many as 12, on her last count—current students and student organizations are also joining the cause this weekend, like the Texas Cowboys, who will be volunteering at a checkpoint from 1 to 3 a.m. Sunday morning.
For Zach Solomon, VP of the Texas Cowboys, it was an easy decision to become involved with Run to the Sun. He has a family friend afflicted with Batten, and his father’s company has run in the race since its inception. It was only natural that the Texas Cowboys would volunteer, though until we spoke, he didn’t know how many UT alumni and students would be participating.
“I honestly wasn’t aware of all the Longhorn presence until just now,” Solomon says. “A lot of people on campus feel the need to reach out and give back to the community, so when something unique like this run comes up, it’s hard to not get interested.”
“We engage the students,” agrees Beyond Batten CEO and President Mary Beth Kiser, BA ’90. “Last year we had a girl who put a team together with her sorority, they were Zetas. This year we went to the volunteer fair for this specific event and we found people who are coming out this year.”
Whether it is intentional or not, Longhorns past and present are coming together for this cause, despite it being one of the lesser-known neurological diseases. At the finish line, they all hope, is an end to the illness.
“I think it gives them hope,” Bryant says. “The symbol behind the race is, running through night, it’s dark, like it would be to a child with Batten as they start to lose their vision. It’s a dark diagnosis, and nobody knows of a cure, but the Bensons and Foundation are paving the way to combat this disease.”
It’s not all darkness however.
“The upside of it is you finish as the sun is coming up,” Bryant continues. “We’re getting fundraising awareness out there, and hopefully there will be a cure some day.”
To view the article in Alcalde, click here.