REGINA - Jasmine Hicks has been struggling to find treatment for her daughter Scarlett in Canada. Now, the parent needs over $90,000 to take her daughter to the U.S. to undergo treatment.
Scarlett, only 3 years old, has had a difficult journey so far. When she was four months old, Hicks started to notice different things from Scarlett that her sons did not do. Around six to eight months after she was born, the family figured out she had autism.
But Hicks and her family felt like there was more to Scarlett’s condition. After going on multiple wait lists, Scarlett suffered a seizure when she was 1-year-old.
Scarlett ended up having multiple seizures, as the family had to spend the holidays in the hospital in 2022. The family knew something was seriously wrong when Scarlett suffered a stroke. Hicks said they put her on medications, and when they drove multiple times to the hospital in Saskatoon, they discovered there might be a possible heart issue going on.
Scarlett has stopped breathing multiple times, and the family almost lost her in those cases. Through further medical testing, it was discovered Scarlett has a tumour in her brain.
Recently, Scarlett had blood work done, which showed she has the NLRP5 gene and the BRAT1 gene. According to the National Institute of Health, BRAT1 causes rigidity, multifocal seizure syndrome and more.
Hicks said BRAT1 is so rare under 150 people have been recorded to have the gene. On record, no one has lived with BRAT1 over the age of 22.
With very little data to go on, Hicks and her family are on a time crunch. The problem is they’ve been on wait lists for over a year now.
Hicks said she gets put on one wait list, then another wait list to see a specialist or a wait list to get a test done.
When asked if she feels the Canadian healthcare system is failing her, Hicks said "100 per cent."
She gave an example of the lack of help Canada’s healthcare has given her. Hicks had tried to see a doctor at the SickKids Hospital in Toronto. The hospital is a level four epilepsy centre, which according to Hicks, is the best centre you can get in the country.
After waiting over a year, Hicks found out there was a miscommunication. Apparently, Scarlett could have gotten seen by a medical professional a lot sooner.
Hicks called the wait list times "absolutely horrible." She added, "I am sitting at home waiting to be seen, waiting to have help and waiting for my child to die because nobody's there to help me. Nobody's there to save me. Nobody's there to advocate. I'm the one advocating."
Now, Hicks is turning to the U.S. to raise the funds to get Scarlett's treatment. Hicks needs around $93,200 CAD to send her daughter to the U.S. Once they get the funding, the plan is for Scarlett to undergo testing, like an EEG test. An EEG is where a small metal disc is attached to the scalp to detect brain activity and diagnose potential brain conditions.
From there, Hicks and the doctors can figure out where to go, what to do next, and have a better understanding of the timeframe for Scarlett.
Thinking about all Scarlett has been through made Hicks emotionally. She said, "This should not even be something that we should even be talking about. This is something that's absolutely horrible. This is no way for a child [to live], and I am doing everything I can in my power to save my daughter's life."
Hicks described Scarlett as "a light in this world." She credited her daughter for being tough and fighting hard to stay alive.
While raising over $93,000 seems like a tall task, Scarlett has received support from the community.
A Pasta Night Fundraiser for Scarlett was held at the Canadian Italian Club Regina on Wednesday.
The idea for the fundraiser started after Hicks's friend Brandy heard about Scarlett having a seizure. Brandy decided to put on the fundraiser for Scarlett last year and is doing it again this year.
Hicks said over 100 people were expected to attend. Each donation her family has received so far has made Hicks forever grateful.
At last year’s fundraiser, around $4,000 to 4,500 was raised. Seeing those numbers, Hicks dropped to her knees, describing the amount raised as a huge difference.
Hicks plans to continue doing more fundraisers to raise the money for Scarlett. She posted to 20 Facebook groups about ideas to raise money.
People reached out to Hicks, suggesting ideas like Chase the Ace or selling Christmas baking goods.
As of Thursday, $6,185 has been raised for Scarlett’s medical funds. To donate, visit gofundme.com
