Mismatched shoes in Greenwich? 11-year-old boy’s classmates imitate his style to raise money for his rare disease

GREENWICH — Sam Buck, 11, was around 5 years old when he decided he wanted to wear mismatched shoes every day.

“Since it doesn’t work, I thought ‘Why not’?” his mother, Allyson Buck, said with a laugh.

Sam, a student at Glenville School, has endangered white matter disease, a rare genetic condition that damages the white matter of the central nervous system. His parents run the nonprofit Vanishing White Matter Families Foundation, the only 501(c)(3) for VWM patients.

The Buck family strives to organize a fundraiser each year for the foundation. This year, Mismatched Day is April 28, a day at Greenwich Public Schools where students can don uncoordinated shoes and socks and donate $10 to the VWM Families Foundation.

The students last participated in Mismatched Day in 2019 before the COVID-19 pandemic halted plans for the same fundraiser in 2020. Sam says it’s ‘cool’ to see his classmates and his teachers in their fun shoes; he smiles and nods as his mother suggests he likes the attention.

“He’s literally the happiest kid around, and I feel like it’s because of the disease, not in spite of it,” Allyson Buck said.

The family were living in England when Sam was diagnosed at 2 years old. They returned to the United States in search of better health care and better education, she said.

And a few years ago, they launched the association. There was an organization in another state for VWM, but it hadn’t filed a 501(c)(3), and the Bucks wanted a way for people to make tax-deductible donations.

The money helps cover expenses that insurance doesn’t pay for, like reclining beds or remodeling a house for a wheelchair. Many families are limited to one income because the other plays a gatekeeper role, Allyson Buck said.

Mismatched Day funds will go to a clinical test who began testing the effectiveness of a blood pressure drug six months ago to treat vanishing white matter disease.

Allyson Buck said there is currently no treatment available for her son, who takes over-the-counter medication such as Advil for symptoms.

“There is hope for other families who are given a diagnosis like ours, that there is actually something out there,” she said. “We knew we had a more serious case of the disease early on. I think when you’re faced with this kind of question, it gives you comfort to think that some of the work you’ve done will ensure that no other family will be in the same situation that we had to be in.”

She said she believed their family was stronger because of their mutual support for the youngest Buck.

Sam and his brother, James, 14, have a close bond, teasing and making each other laugh. Her sister, Imogen, 16, said she was hosting a mismatched day at Greenwich High School with a few clubs to encourage her peers to join.

Donations can be made to vwmff.org/donate or through Venmo @Samsbestdayever.

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Dino J. Dotson