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. We knew that something else was going on and began our search for a diagnosis.

For two years we searched for a diagnosis. We went to see every specialist imaginable. Drew gradually lost his speech, use of his hands and the ability to walk and eat. It is devastating to watch your child lose skills and not be able to get answers. His will and determination have not waivered. Every day is a struggle, but he continues to smile. He has gone from a child who once ran, jumped and played to a child needing constant care.

On January 30, 2007 we 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, we focused our energy on finding a cure. Doernbecher Children’s Hospital in Portland, Oregon is hosting 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 we are 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.

Every morning we wake up and I say “good morning sunshine” and he gives us a huge beautiful smile. It gives us the strength to get through each day. With everything this child is going through he is still happy and enjoys each day. Every moment is a gift. We cherish every smile and laugh. 

The outpouring of support from friends, family, church, school and the rest of our community has been amazing. We are truly grateful for all the prayers.