Scarlett Hicks is described as a happy, cheerful and playful three-year-old girl. But every day she fights for her life.
She battles generalized epilepsy, autism, global development delays, and a rare genetic mutation called BRAT1
It’s a mutation her mother, Jas Hicks, discovered was terminal by doing research online instead of hearing it from doctors when Scarlett was diagnosed.
“I fought for answers,” Hicks said. “I looked around and I called them back because they weren’t responding.
“We planned our daughters funeral because we weren’t getting answers.”
Most people with the BRAT1 gene have died in infancy according to a case report form the national library of medicine.
Scarlett has previously had upwards of 90 seizures a day, but medication has helped some over the last little bit.
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It’s a situation that has left her family of five with nothing but tears and hope.
“There were many nights where she would be sleeping and the seizure camera would be on her and I’d be watching the seizure camera and I’d just be crying while she was sleeping because that was the only time I could cry,” Hicks explained.
Scarlett’s family say they were denied financial help from the Saskatchewan Ministry of Health when they were forced to go to Toronto for treatment.
Now, the family is selling personal items and fundraising money for a $250,000 trip to the United States for trial treatments.
The family has held multiple fundraising event nights and silent auctions to help with costs. A GoFundMe page has also been set up for the family.
“The government really isn’t helping so the only way that I have help is through the community,” Hicks said.
Tiffany Hoffman is a family friend and a fundraising organizer. Her daughter Amelia is Scarlett’s best friend.
“It’s honestly the cutest thing ever the way they play together,” Hoffman said. “After all the diagnosis’ and everything it’s just kind of been like ‘no we don’t want to see Scarlett go.’ She’s part of our family now. We’re going to do what we can to try and raise this money.”
So far they have raised $16,000 and say they are still looking for the light at the end of the tunnel.
“You get even just like a five-dollar donation and it’s just like one step closer to the next goal,” Hoffman said.
Hicks said she is extremely grateful for the support her family has received so far. The experience has also been a chance for Hicks to meet new people and help others going through a similar journey. She said it is a chance to do more.
“This is my life and right now I am fighting for my daughter,” Hicks said. “The only way she can fight is by waking up in the morning and pushing through.
