'Mismatched Day' To Benefit Greenwich Boy, Research For Rare Disease

GREENWICH, CT — For as long as Nicholas and Allyson Buck can remember, their son, Sam, has had a unique fashion sense.

Sam, now 11 and a fifth grader at Glenville School, has always insisted on wearing mismatched clothing. On any given day, you can see Sam at school with a big smile on his face, and different shoes and socks on his feet.

On April 28, Glenville School, other schools in the district and the greater community are encouraged to wear mismatched shoes or socks to support Sam and raise money for Vanishing White Matter Disease research.

Sam was diagnosed with the rare genetic disease that destroys the brain's white matter at around 2 years old following a minor spill off of a bed. Sam bumped is head, and soon after, he lost motor control and was unable to stand on his own.

The sudden loss of motor control can be triggered by head trauma or fever, and even medication or anesthesia.

The progressive disease is incurable, untreatable and ultimately terminal. Children usually live five to 10 years after a diagnosis is made. There are only about 250-300 cases of VWM worldwide.

Unable to stand or bear any weight on his legs, Sam is now wheelchair bound, his hands shake and his speech is slowed.

But despite everything, Sam always keeps a smile on his face, Allyson said.

"He's just a really joyful kid," she added.

The Bucks created the VWM Families Foundation, a 501(c)(3) organization, several years ago as a place where families dealing with the disease can try and raise money for research.

The foundation has raised about $200,000 of a $500,000 goal, which will be put towards the first and only clinical drug trial for treatment that is currently underway in Amsterdam. The trial will take about five years to complete, Allyson said.

Participants in Mismatched Day on April 28 can donate at least $10 through the VWM Families Foundation website, or through Venmo to @Samsbestdayever. Schools in Greenwich will also be taking donations, Allyson said.

For workplace donations, Allyson urges people to contact the VWM Families Foundation to coordinate collection.

The first Mismatched Day for VWM and Sam was was held in 2019 on the anniversary of his diagnosis, but the event was cancelled the past few years because of COVID-19.

Glenville School Principal Klara Monaco called Sam a "bright light" and said he's been "an integral part of Glenville School for the past seven years."

"He is smart, friendly and always happy. He expresses his creativity through his clothing choice, including the fact that he always wears mismatched shoes," Monaco said.

"As a community, Glenville School rallies around Sam, and this fundraiser is another way to celebrate his fun-loving personality and bring awareness to this rare condition," she added. "We consider it an honor to support the Vanishing White Matter Clinical Trial in hopes that a treatment and cure can be found for Sam and others like him."

For Allyson, support from the community over the years has been uplifting.

"I think anybody in our situation when you're facing the unthinkable, the community support is everthing. Without it, it would be so much harder to keep going on a day-to-day basis," she said. "The support means everything to Sam, because it makes him feel so special and loved, and it means everything to us because life is very challenging when you have a terminally ill child. The community support just helps keep you going."

For more information on VWM and how to donate to the VWM Families Foundation, click here.