Steven Hughes wrote -
Drew Ferrandino is a sweet loving boy who loves trains, swimming and his dog Bella. His smile lights the world. Drew developed normally until the age of 3 with only a speech delay. Drew started having seizures right after his third birthday. The neurologist diagnosed him with childhood epilepsy with the hope that he would out grow it. Drew's parents Tony and Katie knew this was something more.
On January 30, 2007 the Ferrandino family received the devastating news that Drew has Late Infantile Neuronal Ceroid Lipofuscinoses (LINCL), more commonly known as Batten Disease. Batten Disease is a fatal degenerative neurologic disease that leaves children blind and bedridden with a life expectancy of 8-12 years. Those with Batten’s disease are unable to produce an enzyme needed to clear toxins from the brain. Without it, permanent brain damage occurs that affects the child’s ability to talk, walk, see and even eat. Its onset usually occurs between the ages of 2 and 4 years.
Immediately after diagnosis, Tony and Katie focused their energy on finding a cure. Doernbecher Children’s Hospital in Portland, Oregon hosted a clinical trial for children with Batten’s Disease. On July 31st, 2007 Drew had surgery to implant neural stem cells into his brain in the hopes they will produce the enzyme his brain is lacking. He recovered quickly and the doctors are pleased with his progress. He is very alert and aware. This trial provides hope for Drew as there are currently no other trials for this disease. It is unknown how the stem cells will work, yet the family is extremely hopeful.
Drew is now in 3rd grade at Newtown Elementary. He loves school and riding the bus. He attends a wonderful program where he is integrated into 3rd grade as well as receiving all of his therapies. The entire school community embraces Drew and make every day special for him.
Research for Batten disease is currently ongoing at prominent institutions in the U.S. and abroad, yet it is severely underfunded. Your donations will go to research to find a cure.
I'm running in the Atlantic City Marathon on October 16, 2011. While the goal is to raise $10,000 I know with your help we can surpass that number. Please make a donation if you can. Even if it's only $10 it's appreciated and will help.
Thank you for your donation to Drew's Hope Research Foundation.
For more information on Drew and Batten Disease visit: