Welcome...
Welcome to the Blake's Purpose Website

Our reason for creating this website is to let you into Blake's life and chronicle his ongoing battle with Batten's Disease/NCL. It is our hope that we can help to educate, increase awareness, and raise money for research to help us and others like us fight this disease that currently takes the lives of all its young victims.

Blake has Late Infantile Neuronal Ceroid Lipofuscinosis (LINCL), which is a brutal and debilitating disease that attacks all functions of the body. Symptoms of this disease are linked to an increase of lipopigments in the body's tissues; causing seizures, loss of vision and mobility, and eventually dementia. Children diagnosed with this disease are missing a gene that is responsible for eliminating the cells of this build up. Over time the buildup of lipopigments causes the death of cells found in the brain, retina, and central nervous system. The death of these cells is devastating to the brain and body's development & function.

Blake's journey began on January 11, 2002 when he was born; he was a very beautiful, healthy, and happy baby. As the oldest of three children, Blake has always been full of life; as a toddler he was rambunctious, mischievous, funny, and loving. He loved to jump around and play with his "papas" tractors, roll around in the dirt, and interact with his friends. He was everything a child at his age should have been. The doctors were pleased with Blake's growth; he hit all of his developmental milestones as a young boy, with the exception of being speech delayed. Concern arose when Blake still wasn't talking much at 3 years old, but the doctors said that there was nothing to worry about. They said that boys more often develop a little slower than girls and just to give him time. It was not until his 4th birthday in January of 2006 that the first sign of a problem arose; Blake started collapsing at his knees for no apparent reason, which was causing him to fall. This didn't seem to bother Blake, he would just pick himself up and continue to play, however as a parent this was a huge red flag. After seeking the advice of his pediatrician, Blake was referred to a neurologist for further analysis. It was about 4 months after the collapsing began that Blake started having seizures, and that week Blake was admitted into the hospital for a series of testing. By June of 2006 Blake was diagnosed with Late Infantile NCL. It has now been four years since his diagnosis, and Blake has lost his vision and can no longer walk. In 2008 swallowing became an issue and so we had a feeding tube placed. Currently Blake is on five different medications and thankfully to this day, we still have good seizure control. We are fighting an uphill battle and doing our best to keep Blake stimulated both mentally and physically. Presently he is still attending school and is involved in both speech & physical therapy. All things considered, we feel blessed to have him with us and find it encouraging to live in a day and age where so many research avenues are being explored for potential treatments and cures intended for Battens Disease.

Blake has a love for so many things; he still enjoys movies, loves to swim and although he has lost his vision, it puts a smile on his face to hear all of his loved ones surrounding him. He can still light up a room with his smile and has touched our lives and hearts in so many ways. He has shown us what it is like to love the world though his eyes, and challenged us to fight for his life.