Will you help publicize Niemann Pick Disease?
October is National Niemann Pick Disease Awareness Month.
Niemann-Pick is a disease that strikes children through accumulation of excess lipids in key cells in the organs. The cells malfunction, leading to failure in basic motor skills, including gait and mobility impairments, eventually requiring a wheelchair and hospital bed. As the disease progresses, other debilitating symptoms develop, such as the loss of the ability to speak and swallow, and seizure disorders. The health of a child with Niemann-Pick Type C (NPC) declines until ultimately, the disease claims his or her life, typically in their teens.
Today, there is no cure for Niemann-Pick, but research is making progress. The National Niemann-Pick Disease Foundation works to fund research and to support families in their day-to-day care of children with NPD. Established in 1992, the NNPDF is an international, voluntary, non-profit organization comprised of parents, relatives and friends committed to finding a cure. www.nnpdf.org
My loving 5 year old boy was recently diagnosed with this disesase. He went from running around the back yard playing on his swing set and babbling to being non-verbal with a feeding tube and an inability to stand or walk unassisted. All in less than 2 years. The more knowledge their is, the better chance of finding a cure.