Battling Batten Disease
By Madeline Rathle
Christiane Benson, 14, loves snow skiing, walking her dogs, and riding horses. However, her greatest passion is impacting others by radiating positivity and hope despite being diagnosed with Batten Disease at the age of five. Batten Disease is an extremely rare neurodegenerative condition that affects children and causes seizures, blindness, and mental and physical incapacity.
Finding Simplicity In Life
Craig and Charlotte, Christiane’s parents, noticed something was off when she was learning to read, Christiane would bring the book close to her face. After seeing an eye doctor, they saw a genetic specialist and neurologist who diagnosed her with Batten Disease. “It took our breath away,” says Charlotte. “When you get news like that, the shock of it really numbs you.”
Craig says, “A big part of our response was our faith. We just dropped to our knees.” The Bensons knew they needed to do something. “The condition is usually fatal by the late teens or early 20s, so it created a real sense of urgency and a race against time,” says Craig. Unexpectedly, the Benson’s communities of family and friends turned out to be the answer to their prayers.
A Coalition of Communities
Through the help of those that surrounded and supported them, the Bensons founded Beyond Batten Disease Foundation, which seeks to eradicate the disease through awareness and research. It has quickly become a world leader in Batten research by joining with over 100 other organizations, in the United States and globally. As of now there are no treatments for Batten Disease, but because of the Benson’s hard work and dedication, this may be changing soon. The organization is in the process of furthering research on its recent breakthroughs to get it in front of the FDA for clinical trials.
The Be Project is a 24-month campaign to raise $6 million to pay for the treatment to get to clinical trial. “Not only are we fundraising, but we are creating a strategy and paving the way for funding and organizing research,” says Charlotte. Craig adds, “It has really been that community of likeminded organizations that has made a difference. It has been a way to maximize our supporters and donations.”
Being an Inspiration
“Christiane is a metaphor for who we are as an organization,” says Charlotte. “She is very determined and strong-willed, and she believes she can do whatever she puts her mind to.” Both Craig and Charlotte have seen their daughter’s unflappable confidence in everything she does even though she cannot see. “She accepts her condition as part of who she is, and she absolutely revels in the idea of inspiring somebody else,” says Charlotte.
One of her biggest fans is her little brother, Garland. The pair have a bond like no other; Garland reads with her at night, describes the world around them for her, and loves her homemade scrambled eggs. “What I like best about my sister is she is smart, she is funny, and she says ‘I can do it’,” says Garland. He even sets aside part of his regular allowance to give to the foundation. He says, “It’s so important because my sister has the disease, so we just want to find a cure.” ■
What an inspirational and wonderful family!