Hockey Game To Raise Money For Greenwich Boy With Rare Disease

GREENWICH, CT — A portion of ticket sales for an upcoming Danbury Hat Tricks hockey game will raise money for research into Vanishing White Matter (VWM) Disease, an extremely rare degenerative brain disease. The event will support both the VWM Families Foundation and Sam Buck, a 9-year-old Greenwich boy suffering from the rare disease.

The fundraiser is the result of a partnership between the FPHL hockey team and CULTEC, Inc., a Brookfield-based family business, according to a statement from CULTEC.

Last year, Sam's mother, Allyson Buck, spoke with Patch about her family's annual tradition of turning Sam's wheelchair into an amazing Halloween costume. Sam was diagnosed with VWM when he was 2. The rare brain disorder destroys the brain's myelin, which permanently affects transmission of brain signals to the rest of his body as a result.

The disease, which primarily affects children, is untreatable, incurable and terminal. Those affected have a life expectancy approximately 5-10 years after the diagnosis.

See also: Greenwich Child Turns Wheelchair Into Amazing Halloween Costumes

According to his mother, Sam still understands everything people say to him and can communicate.

"His speech is slow, but if you pay attention you can understand what he's saying," Allyson Buck said to Patch last year. "He can't stand up or walk, so he's fully wheelchair-bound. He has tremors in his hand, so he can't write or feed himself easily, but he's still incredibly happy. He's so full of joy, and he just gets excited about everything."

Danbury Hat Tricks Director of Communications Casey Bryant has been assisting CULTEC in coordinating the fundraising event.

"We're very much looking forward to organizing a great night with CULTEC and the VWM Families Foundation," Bryant said in a statement. "We always look to give back to our community, and we want to contribute however we can to the search for a cure to this terrible disease."

The game will take place at the Danbury Ice Arena (1 Independence Way, Danbury) on Feb. 21 at 7 p.m., during which the Hat Tricks will play the Columbus River Dragons. Tickets are $14 for adults and $10 for children 12 and younger, and are available by contacting Colleen Luby of CULTEC at 203-775-4416 or via email at cluby@cultec.com.

"We are excited and grateful to have the support of CULTEC," Buck said in a statement. "Our lives changed forever on April 4, 2013, when Sam was diagnosed with this disease. It means the world to us to have the support of CULTEC and so many others. Hopefully their support of research will help save lives."

Anyone who cannot make the event but would like to donate is encouraged to visit www.vwmff.org.