BENEFITING: Sanfilippo Research Foundation, Inc.
At the age of 5, our daugter Blair was diagnosed with Sanfilippo Syndrome. We were told she would slowly slip into the depths of the disease. First she would stop talking, become unable to feed herself, lose her ability to walk, then eventually her body would give up. We were informed her life expectancy is in her teens.
Blair is 12.
There is promising research and we are close to finding a cure. A cure that could help Blair and other children with Sanfilippo.
Blair no longer talks and she is unstable on her feet. Our day is desinged around keeping her as comfortable as possible.
One thing that comforts Blair is music and songs. As a father, I've always wanted to "fix" Blair. It is a helpless situation. Instead, I sing to her. I'm hoping to find others...musicans, actors, athletes... to "Sing for Blair and Fund a Cure" before it is too late.