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