A Yellowknife family is pulling together to raise the funds they need to help one of their own.
Julaine Debogorski has rallied her family to aid Andrew ‘Bouge' Debogorski in his fight against amyotrophic lateral sclerosis (ALS), also known as Lou Gehrig's disease, a fatal condition that affects the body's nervous system, eventually causing paralysis.
Andrew was diagnosed with the disease in June 2017, two years after he first noticed symptoms. In the first year after Andrew had to go on disability leave, his family raised $30,000 to help with his medical expenses. This year they're trying to up that total by the end of October.
“We're trying to raise a lot more this year. We were successful in raising $30,000 last year and so we've got a goal of $50,000 this year because he needs like live-in care and, you know, it's all the time,” said Julaine
In order to reach this year's goal, Julaine will host a large fundraising event that is yet to be announced in October. Before that event however, the family will host a number of smaller events to get the whole family involved in helping Andrew's cause. Over the past two weeks, bake sales organized by Audrey, Andrew's 11-year-old niece, have netted close to $1,500.
“I really just wanted to involve the kids. I did this big fundraiser last year and had some help with the family,” said Julaine. “But the disease has obviously affected all of us so it was a great opportunity to kind of have the conversation with the kids and give them a voice to talk to people about how this has affected them and why should we be raising money.”
Audrey added, “It means a lot because my uncle means a lot to me and I feel really helpful that I'm doing this.”
The increased fundraising objective can be attributed to the way that the disease damages the body, slowly causing symptoms to worsen. In Andrew's case it has seen him go from walking, to walking with a cane, to being in a wheelchair, among other limitations he now faces.
“One day you have the ability to do something and the next day you don't, and it's never going to come back,” said Louise Debogorski, Andrew's mother. “Realizing that is a big thing – you know, the loss of something you've had all your life.”
Next week the family will follow up the bake sales by hosting a car wash in the YK1 Education District's parking lot. They have previously raised money through Gofundme campaigns, bottle drives and bake sales. Julaine says they are also hoping to host bingos and continue their successful online campaigns.
Individuals affected by ALS average a life span of two to five years after symptoms appear. Awareness of the disease rose a few years ago during an international online drive called the ALS Ice Bucket Challenge that saw people challenge their friends to donate to research or dump ice on their heads.