Dear Friends,

I would like to introduce you to our son, Will. He is an outgoing, green-eyed, 7-year old kindergartener who loves to smile and greets everyone with a hug.  He plays soccer, swims and adores his two little brothers. He loves to give “Eskimo kisses, “and say his prayers.   He collects Build-a-Bears, hunts for “waterhorse eggs” at the Beach and loves to watch the zebras at the zoo.  His future was bright, his goals limitless until a life-changing day in June, 2009:  The day our son was diagnosed with a fatal, rare, genetic neurological-degenerative disorder called Juvenile Batten Disease.  It was unimaginable to comprehend that a horrible disease we had never heard of, was planning to ruin my son’s childhood by stealing his vision, mind, mobility and ultimately, his life.

Juvenile Batten is a fatal, inherited disorder of the nervous system affecting 2 to 4 of every 100,000 births in the U.S.  Early symptoms of this disorder usually appear between the ages of 5 and 10, when a previously normal child begins to develop vision problems or seizures. Over time, affected children suffer mental impairment, worsening seizures, and progressive loss of vision and motor skills. Eventually, they become blind, bedridden, and physically and mentally incapacitated, requiring 24-hour care. Batten disease is fatal, often by the late teens or early twenties. Over the past year, Will has gone legally blind, suffers short-term memory loss, occasional stuttering and extreme anxiety.  With no current treatments or cure, this is our Will’s prognosis, and at the moment it is grim.  We are in a literal race against time.

But, there is HOPE.  Our family has partnered with the Beyond Batten Disease Foundation.  Beyond Batten was started in August of 2008 by the Benson Family of Austin, TX who also have an affected daughter, similar in age and symptoms to Will. The foundation is currently funding a group of Italian researchers at Texas Children’s Hospital who are working on a developing a potential treatment for Batten disease.   Together, we will work to accomplish our shared mission:

TO ERADICATE JUVENILE BATTEN DISEASE.

HOPE has been the theme of our journey, which began with our first major, local fundraiser “HOPE Under the Stars” for the Will Herndon Fund for Juvenile Batten Research and the Beyond Batten Disease Foundation that took place in November, 2009. At this event, we were able to share Will’s story and our mission to more than 600 guests and raise nearly $220,000 for research.  Our hope is to continue this momentum with the 2nd Annual Brake Specialists Plus “HOPE on the Green” Charity Golf Tournament and Dinner to take place on Thursday, September 16, 2010 at Grey Rock Golf Club in Austin, Texas.

Monies raised will be donated to fund researchers working to find a treatment and/or cure for Juvenile Batten disease right now.  With no current treatment or cure, our HOPE rests heavily with the privately funded researchers dedicated to fight this disease.    The more researchers dedicated to this rare disease, the higher the chance of a development within our children’s lifetime.  Our goal is to save Will and the hundreds like him.  Failure is not an option; our son’s life depends on it.

On behalf of our family, thank you for your interest, prayers and continued support of The Beyond Batten Disease Foundation.

Kindest regards,

Wayne and Missy Herndon

For more information regarding the 2nd Annual Brake Specialists Plus HOPE on the Green Charity Golf Tournament click here.

A Mother’s Story, by Charlotte Benson

As Christiane and I sat doing her homework one afternoon, hopelessness mounted inside of me as her strong will, independence and defiance reduced me to complete frustration. While fully rejecting my input on a first time attempt, she proclaimed “I already know how to do this, Mom. I’m going to do it like I like to do it.” I retreated to my room in defeat and I didn’t know if I’d ever be able to cope with her strong character. Only a few days later, I found myself praising God for her strength.

That weekend, Christiane was a first grade princess presented in the Helping Hands luncheon, a fundraiser for a children’s foster home in Austin. While each girl was presented on a stage, a bio was read of questions they had answered in their own words. I watched Christiane walk to the center of the stage in her organza white dress and rhinestone tiara, and was moved to hear her answers booming across the loud speaker.

She was asked, if you could invite any famous person to your birthday party, who would it be? She answered, “Monet, the famous artist, because he had low vision too.”

When asked what made her special, she answered, “I get to learn to read Braille, and one day I’ll get to have a Seeing Eye dog.” Not have to learn Braille, but get to!

Memories flooded back to me from a short year ago when I cringed in fear at the thought of a child on the playground telling Christiane that one day she’d be blind, and all the things she wouldn’t be able to do because of it. But instead, just a year later, she, in her own words, was announcing her destiny to 1,000 people and claiming her own fate.

I flashed back to our homework experience earlier in the week, and it occurred to me that the same strong will and independence that have exasperated me so many times are also incredible gifts. I think God often uses our children to teach us something about ourselves and to complete who we are. My conventional way of instructing, organizing and fitting everything into a neat little box doesn’t work with everyone. I realized in order to relate to Christiane, I was going to have to change my approach – I am the one who has to adapt. Perhaps God uses people who challenge us the most to cultivate love and acceptance instead of control and dominance. In no way do I want to squelch her spunk and fiery little personality because her strength of character, courage and confidence are the very things that will serve her so well on the road ahead. Only God knew that when He created her and, of course, He has done it perfectly.

The Austin American-Statesman recently featured a front-page story about the Benson family and the Foundation’s efforts to eradicate Batten disease.

Click here to read more.

Bio-IT published a story highlighting the Foundation, its partnership with the National Center for Genome Resources, and its efforts to develop a carrier screening test for 437 devastating genetic diseases that affect children.

Click here to read more.

The Herndon Family and the research funded by the Beyond Batten Disease Foundation are featured in the latest issue of Shine Magazine, published by Texas Children’s Hospital.

Click here to read more.