GREENWICH, Conn. (CBSNewYork) — Inspired by the ALS ice bucket challenge, one Connecticut family hopes their pie face challenge goes viral.
Allyson and Nick Buck of Greenwich are hoping to raise $1 million for research into Vanishing White Matter disease, an extremely rare neurological condition that causes brain damage which could lead to coma and death.
Their 7-year-old Sam was diagnosed with the disease when he was 2.
Just two researchers in the world are working on it.
“They’ve started to identify some drug compounds which might either arrest the progression of the disease or one might actually have a more fundamental impact on the gene,” Nick Buck said. “It’s still a long way off but we always felt that these kind of journeys towards a cure have to start somewhere.”
Approximately 250 children in the world have the fatal disease — there is no treatment or cure.
Nevertheless, Sam’s mother, Allyson Buck, said he is joy personified.
“He’s happier than any person I have ever met and he makes us happy,” she said. “He’s taught us how to live, he’s taught us what’s important in our life and we don’t worry about the same things that other people worry about. He’s allowed us to just live day to day and live our lives fully and experience as much of life as we can.”
The family started the pie face challenge to raise money for the VWM Families Foundation.
Participants are asked to post a video of someone smashing a cream pie in their face, nominate three others to take the challenge and donate $7, in honor of Sam’s birthday, to the cause.