By Tish Williams in Houston Lifestyles & Homes
Published November 1, 2014
The Community Has Contributed $3 Million to Find a Cure for Juvenile Batten Disease
When Missy Herndon received the call with her son’s test results, the genetic counselor cried over the phone. That’s when it hit her that something was really wrong.
Will was a normal kindergartener. When he held papers closer to his face, Missy and her husband Wayne thought he might need glasses. Then he forgot his alphabet and had to relearn it starting from “A,” but kids do silly things. When a second visit to the eye doctor returned a referral for genetic testing, they began to have some doubts. Still, the Herndons looked to a diagnosis for clarity, the first step to fixing the problem and getting Will back on track.
“I remember the day. The kids were at WoW Science Camp when my phone rang. Picking it up, I was quite confident they had found nothing. I thought, ‘I have this active 5-year-old.’ The genetic counselor started crying on the phone,” Missy says. “I just knew it was horrible.”
Will has Juvenile Batten disease, something found in only 1 or 2 births out of 100,000 in the U.S. It was just an obscure disease they’d never heard of in the fall of 2009, but it would take Will’s vision and his cognitive abilities, and change the Herndon family’s life just the same.
At first, Missy explains, she “hit the floor.” Texas Children’s gives families a few days between diagnosis and in-person discussions so they can pull themselves together. The Herndons went in and learned the basics: their bright-eyed, loving 5-year-old would suffer vision loss, cognitive degeneration, seizures, dementia, and eventually become wheelchair bound, with a life expectancy in the late teens to early 20s.
“When they tell you it’s fatal… ” Wayne Herndon says, his voice trailing off. He’s a big strong guy, and he’s the researcher of the pair. “Our concern had been that he was going to go blind. Instead, ‘It’s fatal. No cure.’ ”
When she got home from the clinic, Missy’s disbelief turned to anger. “I thought, ‘This is not going to happen!’ I sat down at my computer and I wrote out a prayer request. At first I started hand picking the names one by one, and then finally I said, ‘Forget it! If you’ve ever heard from me before, you’re on the list,’” Herndon says. She took one of her favorite photos of Will, with his bright smile and big, green eyes. She explained his diagnosis, asked people to pray for him, and to share her prayer request with others.
Her email went viral, with friends forwarding on the tale of Will’s diagnosis to others far and wide. The Herndons received thousands of replies from across the country. “It is amazing. Even now, five years later, I’ll go to someone’s house and they’ll have a picture up of Will,” Missy says.
The Herndons entered the next phase of their life, the race for a cure for Will. The odds are daunting — when Will received his diagnosis there was very little research in the U.S. studying Juvenile Batten disease. Yet the Herndons quickly linked up with a family in Austin who had a child with the disease and had raised $2.5 million to start the Beyond Batten Disease foundation. Beyond Batten began work with Dr. Huda Zoghbi, the director of Texas Children’s Hospital Jan and Dan Duncan Neurological Research Institute.
Time was of the essence and Missy reached out to her community again. She invited friends, fellow preschool parents, Junior League members, and wives of Wayne’s friends to a “what can we do” meeting, as she calls it — 80 people showed up. Within months, they had raised $220,000 through the first HOPE Under the Stars Gala, 5K races and small events to contribute to researching a cure for Juvenile Batten disease.
Through the Will Herndon Fund and the dedicated Will’s Warriors for HOPE, the Herndons have galvanized the community. Around town, cars proudly bear bumper stickers with Will’s name, while joggers and bikers crisscross The Woodlands with messages of HOPE on their chests.
“We went from just living with three boys doing regular things,” Missy says. “Our whole focus became saving Will.”
By 2014, through efforts such as the annual HOPE Under the Stars Gala —attended by 850 supporters at The Woodlands Waterway Marriott Hotel and Convention Center in September — the Beyond Batten Disease Foundation and The Will Herndon Fund wrote a check for $1.75 million to Texas Children’s Hospital for Batten research. Altogether many friends, neighbors and donors from The Woodlands have contributed $3 million to the find a cure.
“We all thank God every day — there’s a terrible thing that happened to this family, but this is a family that’s going to put up a fight and make a difference,” says Nicole Murphy, a close friend who helped start the HOPE effort. “Some would sit back and wait, but Missy’s making it her mission in life to save him. The rest of the Batten community is blessed to have her on the front lines. No matter what she has to wake up and endure, every day she continues to get up and fight.”
The dollars are making a difference. Dr. Zoghbi quickly identified a group of young Italian researchers making progress with brain cells like Will’s. “We have a fantastic team… that’s using every approach at hand to see if they can reverse this disease,” Dr. Zoghbi says. “Basic research takes money and your support means the world to us.”
Beyond Batten is also funding research to work with Alzheimer Drug Discovery Centers to test drugs developed for Alzheimer’s that may also be able to help kids with Batten. The National Institutes of Health, as well as Parkinson’s and Alzheimer’s foundations, have contributed funding as well. Beyond Batten currently has 38 concurrent research projects for Batten.
Missy and Wayne Herndon have learned the ins and outs of fundraising, viral marketing and neurological disorders. Now the focus is on navigating the research and regulatory hurdles as they talk about having six drugs in the discovery phase, as well as consultants who keep the research on the up and up with the FDA for speedier approval when the time comes.
Meanwhile, Will is growing up. A 5th grader, he is blind and has the cognitive abilities of a younger boy — but he made a smooth transition to Mitchell Intermediate School, where he spends his time learning about a new school and creating reports on animals to deliver to 6th grade classes. As he walks around the football fields on Saturday at SCFL, the Herndons say, Mitchell kids stop him and offer compliments on his presentations. Wherever the Herndons go, well-wishers offer encouragement and prayers.
“We want to make sure Will’s got a good quality of life,” Wayne says. “We want him to have those experiences that kids have. We want him to enjoy himself.”
Five years into an unimaginable journey, the Herndons’ goal is to find a cure, a solution that slows the progress of Juvenile Batten disease and reverses its symptoms in Will. Along the way, they have lifted the hearts and given a purpose to so many in The Woodlands, and the community has risen to the challenge to help create hope for one young boy and his family.