‘Completely dependent on the family’; Caruso family in Merritt raising funds and awareness ahead of Saturday’s ‘Move to Cure ALS’ walk

MERRITT — ALS is a disease that gradually paralyzes people because the brain is no longer able to communicate with the muscles of the body that we are typically able to move at will. Over time, as the muscles of the body break down, someone living with ALS will lose the ability to walk, talk, eat, swallow, and eventually breathe. According to ALS BC, 3,000 Canadians are currently living with the condition, and each day in our country the disease kills 2-3 people.

This weekend communities are holding the ‘Move to Cure ALS’ to raise funds and awareness. In Merritt, Tony Caruso was first diagnosed with ALS four years ago after simply feeling discomfort in his shoulder.

“It’s a really hard thing because there is nothing we can do. So, this walk and raising this money, at least it feels like something we can do,” said Tony’s daughter Tammy Brown.

The risk of developing ALS in your lifetime is 1 in 1,000. The debilitating disease takes away a person’s physical ability to move and even breathe. For Tony, his diagnosis began to take hold slowly, but now four years later, he relies on the loving care of his family.

“And your mind stays completely intact. So, unlike Alzheimer’s or dementia, which is also devastating, you know everything that is going on as your body is failing you,” said Brown.

Tony needs oxygen nearly 24 hours a day and can no longer operate his wheelchair independently. As the disease progresses, his family and the greater community in Merritt have rallied around him.

“We have gone from being able to at least being able to go for a walk with Dad, so it’s hard for him to even sit outside in the heat for very long. He was able to feed himself, he can’t do that anymore, we have to feed him, give him his coffee, bathe him, Mom gets him dressed, everything. He is completely dependent on the family now,” said Brown.

Over the past three years, the Caruso family has organized a ‘Move to Cure ALS’ walk in Merritt. During the last two years, Tony was able to participate. This year he will be there again but with the help of those closest to him.

“The community of Merritt and Princeton, we’ve lived in both those communities, the response has been amazing. Dad has been a longtime local here and he’s well-known by a lot of people, mostly for his kindness and helping others out. So, I think people want to share the same for him,” said Brown of the outpouring of support.

The family is hoping to raise $10,000 this year, and after surpassing their goals the past few years, they’re confident people will step up again ahead of Saturday’s (June 17) walk. The money raised across the province is split between research and patient support.

“Sixty per cent of the money goes directly to families faced with ALS, and that is the BiPAP machine that dad is on right now, the wheelchairs, any kind of equipment that the family needs,’ stated Brown.

The family is expecting around 80 members of the community to join them on Saturday at Rotary Park in Kamloops for the walk beginning at 1:00 P.M.

For those looking for more information on ALS and this weekend’s ‘Move to Cure ALS’ walks happening in Merritt and here in Kamloops or who wish to donate to the cause, visit ALSBC.ca.