Greenwich Child Turns Wheelchair Into Amazing Halloween Costumes

GREENWICH, CT — Like most kids his age, 9-year-old Sam Buck of Greenwich looks forward to Halloween every year. His mother, Allyson, said her son loves being the center of attention as a result of his elaborate costumes.

It is also the only day of the year his classmates are jealous of his wheelchair.

"Kids literally come up to him and say 'Oh, I wish I had that,'" Allyson Buck told Patch. "Nobody looks at him with envy when he's riding around in his wheelchair other than on Halloween."

When he was 2, Sam was diagnosed with a rare brain disorder called vanishing white matter disease, which destroys the brain's myelin. In doing so, it permanently affects transmission of brain signals to the rest of his body.

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

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," Buck said. "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."

When he was in preschool, Sam got excited about dressing up as a pirate for his school's Halloween parade. To take his costume to the next level, Sam asked his mom if she could turn his chair into a pirate ship.

After making good use of a large discarded box, Buck said she was able to make Sam his ship.

"He just loved all the attention he got from it, because all his friends were jealous of his pirate ship," Buck said. "From there, we just kept going ... it kind of got more elaborate as the years and the themes went on."

Since then, Sam's chair has been everything from a race car to a dragon, and even Elvis Presley's pink Cadillac.

Sam and his siblings, ages 13 and 11, come up with themes for their costumes each year, which their mom then tries to execute.

"They love it," Buck said. "And they are very specific about what I need to make them. I don't get a lot of creative freedom!"

This year's theme is the Beatles, for which all three Buck children will wear Sgt. Pepper's-type uniforms and Sam's chair will be made into a yellow submarine. Buck started sewing the outfits a couple weeks ago, and the entire set of costumes, complete with submarine, will likely be finished just before the big day.

"It's basically a six-week process," Buck said. "I very rarely am done much before Halloween."

Due to the positive reactions the costumes receive, both from his classmates and the houses they go trick-or-treating at in their Glenville neighborhood, Sam and his mom will often look for excuses to reuse them.

"We went to the Renaissance Fair the other day and used his costume from last year, which was a knight on a horse," Buck said. "He loves getting a second use out of them, because he gets so much attention when he's out in them. He likes to be the center of attention."

For Buck, the pure happiness and excitement the costumes elicit from her son is far from unusual. In her eyes, Sam is joy personified.

"He literally is just happy all the time; nothing gets him down," Buck said. "He has every right to be miserable, but he never is. He's just so positive about everything...and he's so grateful for even the tiniest things. We have two other kids who are really nice and kind children, but [Sam's] just got a different level of gratefulness for every moment of every day. It really is inspiring."

For more on Sam's journey, follow his Facebook page. For more information about vanishing white matter or to donate to families affected by the rare disease, visit the VWM Families Foundation website.