The Woodlands resident Will Herndon had just turned 6 when he was diagnosed with juvenile Batten disease—a rare and fatal degenerative brain disease with no known cure.
“We got a phone call from the genetics clinic at Texas Children’s, and when I answered, the genetics counselor started crying. So I knew immediately it was something really bad,” said Missy Herndon, Will’s mother and HOPE founder. “At that time, there was no research, no treatment and no cure. They were basically like, ‘Go home and enjoy your child [because]he’s going to keep getting worse and then die.’”
The disease is a genetic condition, which begins showing symptoms in affected children around age 5 or 6. Vision and memory loss progress over time, leading to seizures, loss of speech and mobility, and death by the individual’s late teens or early 20s, according to the Beyond Batten Disease Foundation. It affects about 200 children in the U.S.
“We have to find something,” she said. “We’re in a race against time.”
The family launched HOPE, also known as The Will Herndon Foundation, in August 2009. Partnered with the Beyond Batten Disease Foundation, the nonprofits raise funds for research projects seeking a cure for the disease.
Through fundraisers, individual and corporate sponsorships, HOPE has donated nearly $6 million to 30 projects seeking treatment for the fatal disease, Herndon said. One of the most promising projects, she said, is housed in Houston’s Jan and Dan Duncan Neurological Research Institute and could go to clinical trial this October.
“We were just naive enough to think that we could [do this], so the fact that we’re this close to clinical trial is amazing,” she said. “If this treatment works, it will slow progression by 50-75 percent and buy us time to find something to stop progression and save Will. It will be a miracle.”
Now 15, Will is in seventh grade at McCullough Junior High School, where he is in the life skills program. He also participates in the Special Olympics, plays baseball in the Challenger League and wants to be a zookeeper when he gets older, Herndon said.
“We started this for Will, but this is so much more,” Herndon said. “This is for all these kids that, God-willing, won’t have to go through these things because they will be saved by this treatment.”
Herndon said that without ongoing support from the community, the world would not be as close to finding a cure for juvenile Batten disease as it is today.
HOPE’s next fundraiser will be the 10th annual HOPE Under The Stars event on Oct. 20 at The Woodlands Resort and Conference Center.
“We’re very blessed that The Woodlands has taken this cause on, and we just really need that support for a few more years so we can get [Will] saved,” she said. “We’re almost there.”