By Lindsay Peyton in The Woodlands Community Extra of The Houston Chronicle

Published on February 25, 2015

Will Herndon celebrated his birthday this month. For most families, this would be a joyous occasion, but the Herndons are in a race against time.

The 12-year old resident of The Woodlands is battling Juvenile Batten Disease, a fatal, genetic disorder of the nervous system.

“Birthdays are very difficult,” Will’s mother Missy Herndon said. “The years go by too fast.”

The symptoms of the disease start with vision and memory loss or seizures and progressively worsen over time until affected children become bedridden and blind, suffering from a form of dementia.

Will was diagnosed in June 2009. His parents noticed that he was losing his vision, and an optometrist recognized markers for a genetic disorder. Texas Children’s Hospital tested him for Juvenile Batten Disease, and the results were conclusive.

“It was impossible to think that a healthy child can degenerate to a point of being bed-ridden,” Herndon said. “Will is just such a joyful child. My heart sank to know this was going to happen to him.”

The Herndons looked around for a solution to no avail.

“We thought, ‘There’s got to be something out there,’ but we realized there’s not,” Herndon said. “The only way for him to live would be for a miracle from God.”

And she thought that the best way to hope for a miracle would be to ask people to pray.

A week after the diagnosis, Herndon sat up late at night composing an email to send to everyone she knew, asking for prayers and support.

“That request literally went viral,” she said. “We were getting emails back from all over the country, then all over the world. All of these people wanted to help us do something.”

Residents of The Woodlands wanted to help most of all.

When the family decided to establish the Will Herndon Fund for Juvenile Batten Research with the goal of raising money to fund research for the genetic disorder, the whole community jumped on board.

Members of the Herndon’s church, parents from the preschool, ladies in the Junior League all came to join the cause.

“This community in The Woodlands have taken on Will as their own son,” Herndon said.

In the five years since the foundation started, it has raised $3 million for research at Texas Children’s Hospital – all through golf tournaments, fun runs and other grassroots fundraising efforts.

“No one knew what this condition was,” Herndon said. “To go out, to educate the community, to fundraise for a disease no one has ever heard of, was really a huge step for us. But we were so inspired to make a change that we weren’t even aware of how daunting a task it was.”

Herndon joined in with the Beyond Batten Disease Foundation in Austin to combine funds and push for a scientific discovery. Together, they have raised $6 million.

Due to the small number of individuals touched by the disease, Herndon explained that it was difficult to get attention or funding from the National Institute of Health. It affects such a small part of the population, two to four of every 100,000 births in the U.S. according to the institute’s statistics.

“When you bring private funding, you will get attention,” she said. “But you have to get to that position first.”

Chuck Meyer is another resident of The Woodlands who has a child with Juvenile Batten, his daughter Emily.

“It’s obviously something very near and dear to my heart,” he said. “My wife and I are so grateful to Missy. A lot of parents can’t see beyond the devastation of the diagnosis. Missy is a very special person.”

Meyer noted that pharmaceutical companies are also reluctant to fund research that only benefits a small population.

“Parents and families of the victims of rare diseases all suffer from the same fate, because there are no champions in research,” he said. “That’s why raising money and awareness is so important. And that is what Missy has done so well.”

Thanks for Herndon’s fundraising efforts there are now six drugs being developed at Texas Children’s Hospital that could provide hope to patients with Juvenile Batten.

“It’s amazing to think that all happened in five years,” Herndon said.

Every year, on the anniversary of the diagnosis, Herndon resends her initial email asking for prayers to the individuals who have supported the foundation through the years.

“It’s what sparked everything,” she said.

In the email, Herndon attached a photo of Will, a close-up that showed his shining eyes.

She said to this day, when she walks into a home or office in The Woodlands, she often sees the photo on display, taped to a desk or hanging on a wall. She knows that the photo was printed five years ago and supporters displayed it as a reminder for prayers and to encourage hope.

“It’s still my favorite picture,” she said. “I really believe it inspired people.”

At first, Herndon worried that the community’s efforts and support would lose momentum over the years.

“I kept telling people, ‘This is a marathon, not a sprint,'” Herndon said. “Research takes time. And there’s never been a treatment for a degenerative brain diagnosis, which is scary.”

But the local support has not waned. In fact, at the last gala, the 2014 Hope Under the Stars, the foundation raised more than ever – $480,000 with 850 attendees.

“That’s incredible for a grassroots organization run by volunteers,” Herndon said. “People have become invested in this cause. They want this child to make it.”

She said that constant fundraising is required to keep the research going.

Herndon added that the findings will not only help individuals with Juvenile Batten but also with patients diagnoses with neurodegenerative diseases, including Huntington’s, Parkinson’s, Alzheimer’s and Multiple Sclerosis.

“This isn’t just helping 200 kids; this is helping million of patients,” Herndon said. “This community has been a part of changing the lives of so many people.”

Want to help?

For more information about the Will Herndon Fund for Juvenile Batten Disease Research, a fund of the Beyond Batten Disease Foundation visit www.willherndon.org or www.beyondbatten.org.

Read original article HERE.

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