When Getting a Pie in the Face is a Good Thing
By Rob Adams
Sam Buck lights up any room he’s in. No illumination is needed. Sam’s smile is everything.
Sam is seven years old, and he’s in a race against time.
Sam has Vanishing White Matter disease (VWM), a fatal condition that currently has no known cure. Those with VWM generally have a five-to-10 year lifespan after symptoms appear.
So Sam knows what he’s up against. That doesn’t mean his family is going to stop trying – or living.
Sam’s parents, Allyson and Nick, along with siblings Imogen and James, have been launching pies in the faces of people all around Greenwich. In the same way that the Ice Bucket Challenge raised awareness and money for Amyotrophic Lateral Sclerosis research (also known as “Lou Gehrig’s Disease), the Bucks have been doing the Pie Face Challenge to do so for VWM.
The idea is to put a pie – or a plate loaded with whipped cream – in the face for fun, with $7 being donated to the VWM Families Foundation for each pie.
Donations can be made at https://www.crowdrise.com/o/en/team/the-vwm-families-foundation-pie-face-challenge.
So many have gotten in on the fun that the event has been extended into October (September is Leukodystrophy awareness month).
“Actually Glenville and Western (schools) are planning big events, and I know a couple of the other schools are trying to do something,” Allyson Buck said.
Allyson added that Western Middle School will host their Pie Face event on Halloween, and that over $7,000 has already been raised.
“Hopefully 15 by the end of the month,” she said.
That being said, they know the odds aren’t great that the money and research – though strides are being made against VWM – won’t help Sam.
“We’re realistic that there’s still still a chance that it won’t come in time for Sam, but we can’t not try,” Allyson said.
To see Sam, one might think he’s an overall healthy boy, but he does need assistance. He uses a wheelchair and – as his mom said – he wobbles a bit.
“Sam looks so normal that it’s hard for people to understand how sick he is,” she said. “Just because you don’t look sick doesn’t mean you’re not sick.”
To talk to Allyson is to understand grace and the power of making the best of a situation. Despite Sam’s condition, the Buck family lives every day to the fullest.
“When something like this happens, you have a choice,” she said. “It’s a big temptation to not get out of bed some mornings. We have two other children that need us.”
Sam’s diagnosis – which Allyson makes clear is fatal – has brought their family closer together. Nick has backed down from working as much as he might have, and the family travels more, with a goal of getting Sam to each of the 50 states. The family has upcoming trips to New Orleans and California with the hope of going to Alaska next summer.
“It’s allowed us to live,” she said. “Quite frankly, he’s still here. That mindset has made all the difference. We don’t feel sorry for ourselves.
“Don’t get me wrong. We did at first. Sam has allowed us to live.”
The modern parent is inclined to get their children involved in every activity. There are times set aside for music lessons, dance lessons, sports, boy scouts, and so much more, along with time set aside for homework.
In the Buck household, the focus is on each other. Allyson said the kids do the activities that are important to them. Their perspective is different.
“What’s most important is being together as a family,” she said. “We focus on experiences; giving the kids as many experiences as we can. There are no gadgets in the house.
“But we’re together all the time and we do these exciting things. It’s genuinely made us happier.”
The Buck family is in this for the long run, Allyson said. Regardless of Sam’s future, she said they will be looking for a cure.
“We will still keep fighting for a treatment and a cure,” she said of the battle against Leukodystrophy and other rare diseases.
She described Sam as “happy.”
“That’s all that matters,” she said.
As a result of a visit to the famed Lambeau Field – home of the Green Bay Packers – Sam has become a fan of the team, and was pleased with their recent victory over the Dallas Cowboys.
“His joy is so infectious,” his mom added.
There is, however, a very harsh reality. Just how much time does Sam have left?
“Most kids live between five and 10 years following diagnosis. In February, it will be five years for Sam. The younger you’re diagnosed, the more rapid the disease progresses. We have no idea how much longer we’re going to have with him, but any sort of treatment is probably three years off.”
Asked for a favorite pie face, Allyson Buck laughs.
“The Glenville one was pretty awesome, I have to say,” she said. “Watching Mr. (Principal Marc) D’Amico get pie faced was one of the highlights for Sam.
Sam will pie face Mr. D’Amico himself in the upcoming days.
Please visit Sam’s page on Facebook (https://www.facebook.com/SamVsVwm/) and his blog (https://samvsvwm.wordpress.com/) to keep updated on upcoming events.