Riley was born on September 27, 2002. She was the daughter of David and Nicole. Riley had Sandhoff Disease—a rare, genetic disease of the lipid storage system that causes progressive deterioration of the central nervous system. The onset of the disease usually starts when a child is six months old, and symptoms include early blindness, progressive mental and motor deterioration, and frequent respiratory infections. Life expectancy for Sandhoff sufferers is only three years; Riley beat the odds, living for 6 years. She died on November 4, 2008.
Riley was nicknamed “Princess Riley Bear.” Her parents describe her as “unforgettable, the most sweet and lovable child. You could just sense her little body radiating unconditional love through every snuggle, every cuddle, and every butterfly kiss she gave. Everybody who met her fell in love with her.”
The family would like to call people’s attention to the National Tay Sachs & Allied Disease website and the Sandhoff Disease website.
who we serve
We serve families with children, ages 18 & under, facing life-threatening conditions. We also serve families with terminally-ill parents nearing end-of-life, who have children ages 18 & under. Learn more