Family and community unite to fight 9-year-old Will Herndon’s Juvenile Batten disease

By Missy Herndon

Our son Will is an animated, optimistic, green-eyed third-grader who loves to laugh and greets everyone with a hug. He is a big brother, grandson and loving son. His favorite movie is The Wizard of Oz, and he treasures his Build-a-Bear collections. He also loves basketball, karate, swimming and golf.

His future was bright and limitless — until June 2009.

That’s when we received the most devastating news of our lives: Will was diagnosed with Juvenile Batten disease. It is a rare, genetic, degenerative brain disease that attacks an otherwise healthy child around the age of 6. Vision loss is often the first noticeable sign — Will had begun standing six inches from the TV and holding papers up close to his eyes — becoming progressively severe, followed by seizures. Batten disease robs children of their childhood and sends them down a path of total blindness, dementia, Parkinson-like symptoms and loss of mobility and cognitive skills until they are wheelchair-bound, and then bedridden. With no current treatment or cure, this disease is fatal in the late teens or early 20s. It affects between 2 to 4 of every 100,000 births in the U.S.

Imagine giving birth to a healthy child, watching him hit all the milestones — crawling, walking, talking, kicking a ball — and then being told that a disease you’ve never heard of is going to take all that away, and eventually, take him away too. Children who could talk and laugh become unable to speak, swallow, and lastly, breathe. Batten disease is devastatingly cruel. For our son Will, and all the children affected, we are in a literal race against time.

THAT FUTURE IS UNACCEPTABLE.

Since that fateful day that changed the course of our lives, my husband Wayne and I have vowed to fight this disease. Knowing that this was bigger than anything we could ever imagine, we turned to our faith, family, friends, and community. We are blessed to have an army of support to help us fulfill our mission:  SAVE WILL.

Our plan is simple: spend the next several years raising money for research toward a cure.

 

Moving Toward A Million Dollars

Our family partnered with the Benson family of Austin — who have an affected daughter similar in age and symptoms to Will — and the Beyond Batten Disease Foundation (BBDF) they created. We established The Will Herndon Fund for Juvenile Batten Disease Research in September 2009. In just three short years, the Will Herndon Fund has raised more than $825,000 locally for privately funded Batten disease research. With our upcoming fundraisers, we are on track to exceed the $1 million mark by the end of 2012.

These funds are crucial to develop the life-saving treatment we so desperately seek for Will and the hundreds of other children affected. With such a rare condition, there is very little public funding. Thanks to the dedicated support of this amazing community and The Will Herndon Fund’s partnership with the BBDF, four research projects specific to Juvenile Batten have begun:

•  We joined forces with the Texas Medical Center, the largest medical complex in the world, and the Jan and Dan Duncan Neurological Research Institute at Texas Children’s Hospital , to recruit elite researchers to Texas to focus on Batten disease. They are surrounded by unparalleled physical resources, collaborative teams of multidisciplinary researchers all working on pediatric neurological diseases, and a brain trust that ranks in the top 5 for obtaining competitive grants from the National Institutes of Health (NIH). This group of gifted investigators is now eligible to compete for millions in NIH funding. Their discoveries, slowing the progression of the disease in animal models, look promising. Next step: gathering safety and efficacy data to obtain FDA approval for a clinical trial.

•  The Will Herndon Fund and the BBDF have hired a pharmaceutical industry-trained regulatory consultant to escort the above discovery through the FDA-approval process. Such consultants have an in-depth understanding of what pre-clinical testing is sufficient to obtain FDA approval to begin a clinical trial. This will save both time and money by avoiding unnecessary testing. Experience in this area cannot be underestimated, as the vast majority of FDA applications are rejected.

•  The Will Herndon Fund and the BBDF partnered with the American Brain Foundation to create the first clinical research fellowship for developing a treatment and cure for Juvenile Batten disease. The two-year, $130,000 fellowship is an important milestone. The selected clinical research fellow will engage in patient-oriented research specifically designed to get reliable results from upcoming clinical trials. Our goal is to safely accelerate the development of life-saving drugs.

 

Living With The Threat of Loss

Will is now 9 years old. Every inch he grows, tooth he loses and seizure he has is a harsh reminder of our race against time as his disease progresses. Since his diagnosis, Will has gone legally blind and his vision continues to deteriorate.

Currently, we have no treatment or cure for him. However, with your help, prayers and support, that can change. The more researchers dedicated to this rare disease, the higher the chance of a cure or treatment within Will’s lifetime.

FAILURE IS NOT AN OPTION. Our son’s life depends on it.

On behalf of our family, thank you for your consideration and support.

 

UPCOMING FUNDRAISERS:

Join us for the 4th Annual HOPE Under the Stars “Texas Chic” Fundraiser & Dinner on Saturday, Sept. 15, at 6 p.m.at the Woodlands Resort & Conference Center. More than 700 guests are anticipated, and they will be treated to dinner, dancing to the Bucktown All Stars from New Orleans, a mechanical bull, casino tables, a photo booth, and silent and live auctions. Tickets and sponsorships are available on the website.

Will’s Warriors will be running in the 10 for Texas 10-mile race through The Woodlands on Saturday, Oct. 13. Little Warriors can join in on the “fun-raising” by participating in the 1 for Texas Kids Run. Create a fundraising page for these races or any upcoming events on our website and join Will’s Warriors for Hope Facebook page for more run details.

Check out willherndon.org for more information on both of these events, or Juvenile Batten disease.

 

Missy Herndon writes the “Scene in The Woodlands” social column for The Woodlands Lifestyles & Homes.