By Quita Culpepper on KVUE

Published on April 10, 2015

AUSTIN – A run will be held this weekend to help benefit a girl with a rare disease.

The Beyond Batten Disease Foundation was founded by Craig and Charlotte Benson to find a cure for Batten disease and prevent hundreds of similar rare genetic diseases that claim the lives of thousands of children every year.

When Christiane was born, the Bensons made it their mission to fill her life with love.

“She’s still daddy’s little girl,” Craig said.

When Christiane turned five, her parents noticed she was having trouble reading and thought she needed glasses. Instead doctors gave them heartbreaking news.

“We ultimately got the unfortunate diagnosis of Batten disease,” Charlotte said.

Batten disease is a disorder of the nervous system that typically starts in childhood. Over time, affected children suffer mental impairment, lose their sight and their motor skills. The disease is usually fatal by the late teens or 20s.

“Naturally it was the worst day of our life, and it absolutely takes your breathe away in every sense of the word,” Charlotte said. “It devastated us.”

The Beyond Batten Disease Foundation was founded by Craig and Charlotte Benson to find a cure for Batten disease after their daughter was diagnosed with the disease.

The organization brings help and hope by educating others about the rare genetic disorder and raising money to find a treatment and a cure.

“We think there are about 350 kids in the United States that have Batten disease,” Craig said. “Funding for a rare condition like Batten is much more limited and there are many fewer scientists working on this.”

On April 11 the foundation is holding the 5th annual “Run to the Sun.” It’s an overnight relay that starts at Enchanted Rock State Park and ends at Camp Mabry. The hope is to raise at least $300,000.

Now 12-years-old, Christiane is nearly blind — but this full-spirited little girl just made the cheerleading squad. Her family and the community continues to fill her life with love and support.

“We’re all running to the sun and the light and the hope of a new day where there is no more Batten,” Charlotte said.

The Run for the Sun will end with a sunrise celebration and 2K Fun Run at Camp Mabry the morning of April 12.

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