From bathing in beer to tipping his toes into a comedy career, Andrew Debogorski is making a bucket list of things he wants to do before his ALS symptoms worsen.
This weekend, Yellowknifers can help him see these goals come to reality through a dinner, concert and auction fundraiser. The event will also raise money for Debogorski’s day-to-day needs, quality of life and potential relocation for experimental treatment in the U.S.
The 31-year-old was officially diagnosed in early June with the rare neurodegenerative disease, also known as Lou Gehrig’s Disease.
Debogorski’s sister Julaine said his health is rapidly declining, but he is working to stay upbeat.
“Physically he is getting worse,” she said. “He said he’s gonna walk until he can’t walk anymore but it’s happening fast … He’s working really hard to stay positive, good days and bad days, but he’s really committed to getting the most out of his life and fighting this thing with all his might.”
Julaine and Andrew sat down together recently and created a list of things he wants to do, including a family trip to Poland with his parents and 11 siblings.
“There’s some great items on there and then there’s some kind of funny, silly items,” said Julaine.
Andrew brews beer, so the list includes bathing in beer in a Czech Republic beer spa. As a hip-hop artist who goes by the name Bouge, Andrew also wants to get into comedy with his own stand-up routine.
ALS affects between 2,500 to 3,000 people in Canada according to the ALS Society of Alberta. The disease affects the nerves that send messages from the brain to muscles. People who have ALS suffer from muscle weakening and wasting, eventually leaving them immobilized and unable to breathe or speak.
In the Northwest Territories, receiving health care for a disease like ALS is a challenge.
Andrew requires physiotherapy and massage on a daily basis, as well as other medical support.
Julaine said health-care providers have been very helpful, but system itself is flawed.
“The health-care system has been really hard to navigate,” she said. “A lot of the different areas that we’ve been dealing with, they don’t talk to each other and they don’t give us the resources to access a more full spectrum of care.”
The cause of ALS is unknown and there is currently no treatment that cures the disease or prolongs life significantly. The family is hopeful a stem-cell trial at Cedars-Sinai medical centre in L.A. will be a good fit for Andrew.
Guests at tomorrow’s fundraiser will be serenaded by instrumental jazz duo The Sean Kieran and Andrew Jossa Duo, country singer Baby Brian’s Country Club and rockers Erebus and Terror. At a live and silent auction, prizes include an overnight sailing trip, Oilers hockey tickets, original art pieces and a personalized song by singer-songwriter Craig Cardiff.