Samuel Buck, 9, his sister Imogen, 13, and brother James, 11, are famous in their Greenwich, Connecticut neighborhood for their amazing and elaborate Halloween costumes made by their mom, Allyson. This year, the siblings will dress up like members of Sergeant Pepper's Lonely Hearts Club Band.
Sam, who uses a wheelchair, will helm his own yellow submarine. Sam is living with an incurable disease, and Halloween is a chance for him to be the center of attention for the best, happiest reason.
Like just about every kid ever, Sam fell off the bed one night when he was 2 years old and bumped his head. But though he seemed fine afterward, he suddenly could not bear weight on his legs.
A CAT scan later explained what happened: Sam is one of 250 people worldwide who suffers from Vanishing White Matter Disease, a form of leukodystrophy that progressively affects the nervous system and causes the neurological system to deteriorate. Common maladies of childhood — bumps to the head, fevers, or even certain medications — can cause the white matter in Sam's brain to disappear, replaced by water. Any stress at all can be devastating.
As a result, children with VWM lose their motor function, struggle with learning difficulties, and typically live only five to seven years after they are diagnosed. There is no treatment or cure.
Allyson said that Sam, who still has a great vocabulary but cannot walk and has some difficulty speaking, is still "the happiest child you will ever meet."
"He always has a smile on his face," she told TODAY Parents. "He is the most positive kid in the world. He has every right to be miserable, but he whines about nothing. His outlook is incredible."
One of the things Sam loves is dressing up for Halloween. Starting in preschool when he was 4 years old, Sam has been asking his mom to make him epic costumes incorporating his wheelchair, and she has delivered.
The first year, it was a pirate and a pirate ship, which she made out of an enormous cardboard box. "When we put it on his wheelchair, he got a big reaction at school," said Buck. "That was the first time anyone had ever been envious of Sam. He loved that kind of positive attention. He loved that for the first time, his classmates were jealous of him."
Over the years, the costumes have continued to bring him a lot of joy, his mom said, and so she has been happy to keep making them. Sam has been Elvis in his pink Cadillac, Formula One race car driver Sebastian Vettel in his Ferrari, Harry Potter with his dragon, and a knight on horseback for a Renaissance Faire theme.
His favorite costume thus far, Buck said, was the year he dressed up as Vettel, whom he idolizes. "He was thrilled with the working steering wheel on his car," she noted.
Though they don't know how much more time they will have with Sam, Buck said she and her husband, Nicholas, have been grateful that he can attend a regular classroom at the local elementary school, where he has made good friends. "He loves being there," she said. She said Sam has had a positive impact on his classmates and his siblings, who always dress up with Sam on Halloween.
"Imogen and James are more mature, more empathetic, better people because of Sam," said Buck. "He brings us all such joy. It makes it easier on us to face his future knowing his life has affected the lives of others."
The Bucks have created a charity, the VWM Families Foundation, to raise money to research the disease and to support the families affected by it.