Published November 30, 2016

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.

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