A High River woman is reaching out through a GoFundMe campaign to raise money for necessary treatment.
Many people in town know Candisse McCormick, who has a genetic condition, spinal muscular atrophy, that has left her in a wheelchair.
"When I was about a year old I stopped doing normal baby functions like holding my bottle, I wasn't trying to sit up or crawl, so my parents got me checked out and when I was about 15 months old they diagnosed me with a genetic condition, spinal muscular atrophy, which we shortened to SMA, and it's a genetic disease that affects your central nervous system, your voluntary muscle movements, so it affects your ability to crawl, walk, sit up, breathe, chew and other daily tasks that most of us can do," she explained.
McCormick's parents were told at that time Candisse wouldn't live to see her fifth birthday because SMA, at that time, was a life-threatening disease, without a cure or treatment.
In January of this year, she turned 40.
"I've had back surgeries to get rid of the scoliosis in my spine, I got my first power wheelchair when I was three years old so that has basically what I've lived in is my chair which gets me where I want to go when I want to go so that's great.
Up until five years ago, there was no treatment on the market for SMA so we did physio just to make life a little bit better, a little bit more comfortable but there was nothing on the market that would prevent, cure it or make it go away."
"The GoFundMe was created because as I go through the process to get these treatments I have been denied several times for both treatments and the one I'm fighting to get is Risdiplam and it's an oral medication, so it's something that I would have to take on a day-to-day basis, so one a day every day for the rest of my life and it's less invasive than the other treatment which is why my doctors say that's the best option for me."
However, it costs about $1,000 a day.
McCormick says the province of Alberta's specialized drug benefits program will only pay for special medications for those 25 years of age and younger while in B.C. and Saskatchewan, it's looked at on a case-by-case basis.
"I got tired of waiting over the last couple of years because we thought policies would change or more research would come out to prove that this was a beneficial treatment for adults with SMA and so I turned 40 and I still want to live a long full life and I guess in order to do that effectively and get the treatment I need to fight the government and start fundraising myself, to get the treatment that will improve things like my breathing, my overall energy level. Studies have shown that some people have gained a little bit of dexterity and arm mobility back.
She says it's not a cure and won't help her walk but will help with everyday tasks that many people take for granted.
"Part of my message is that many able-bodied people take for granted simple things like brushing their own hair and getting dressed on their own and these are day-to-day tasks that I need help with and over the last couple of years I've needed more assistance than ever so knowing that there's a treatment on the market that can prevent that or make my life better, it's almost like a slap in the face I guess because it's almost easier to live a life knowing there's no cure or treatment on the market,"
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