As we enter the week of Thanksgiving, I look forward to celebrating all of the things we are most thankful for and at the top of my list are our healthy children. Last year, one of my dearest friends found out that her seemingly healthy child was not so healthy as he was diagnosed with Sanfilippo Syndrome, a rare, genetic and terminal disease.
Will Byers was just a happy-go-lucky little boy who loves grilled cheese sandwiches and Mickey Mouse and had his whole future ahead of him. To discover that your beautiful child has a rare, incurable, degenerative disease is unimaginable and is something no parent should have to face. In an instant, every dream parents have for their child, from playing little league to college graduation, becomes uncertain. Sanfilippo Syndrome is a progressive disorder that starts to shut down the brain and central nervous system. Enzymes needed for cells to process cellular waste are missing or are poorly functioning. Over time, waste build up leads to severe disability, robbing a child of the ability to walk, talk, and do everyday activities independently, eventually leading to early death. The heart breaking truth is that without funding there is no treatment. Without treatment, most Sanfilippo children do not reach adulthood. But, even now, we find HOPE. Please help us raise awareness and find a cure!
All donations go directly to Cure Sanfilippo Foundation (Tax ID: 46-4322131, www.CureSFF.org), a non-profit 501c3 organization, and will be used to fund the most promising upcoming research and clinical trials for Sanfilippo Syndrome. All donations are tax deductible. To learn more about Will’s story, please visit www.facebook.com/willpowermps.
I’m hoping to bring WILLpower to California this Thanksgiving and raise money for him and all of the other children affected by this awful disease by running a 10k in his honor. I know the holidays are right around the corner and everyone has extra expenses but if you are able to donate, any amount helps. Thank you!!
With WILL Power,