A KelownaBritish Columbia, the woman helps to make known rare disease It touched his family personally.
May marks the month of awareness of tuberous sclerosis (TS) in Canada on May 15 being World Tuberal Sclerosis Day.
“It affects one in 6,000 to one in 10,000,” said Cindy Fairs.
TS is characterized by mild tunors in the brain and many other parts of the body.
The Shayla fairs girl was diagnosed with TS when she was only seven and a half months old.
“She had a crisis and the doctor did not recognize her as a crisis. Two days later, it was a crisis of status and we ended up in the hospital and we almost lost it at that time,” said Fairrs.
“She ended up crossing three hospitals and ended up at the British Columbia children’s hospital before her diagnosis.”
It was in 1989 and although Shayla is now 36 years old, she was at the level of a child aged three to five.
“She does not know how to count, she does not know her figures, she does not know her letters, she does not know my name,” said Fairs.
The fairs said that brain surgery was considered when Shayla was five years old, but it never happened.
“At that time, they had never done cerebral surgery on anyone with tuberous sclerosis in Canada, so we were trying to go to California,” said Fairs.
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“We could not go there because of the cost of surgery and everything that comes with this and BC Medical would not cover it.”
The fairs said that the idea was again revisited when Shayla was 14 years old.
“At that time, surgery occurred for people with tuberous sclerosis in Canada, but there had been so many tumors that had developed in his brain, they could not isolate them, so it was no longer an option,” said Fairrs.
The fairs said that reflecting on the date of diagnostic of his daughter in his first year life reminiscent of difficult memories.
“When I think about it, it brings me back to a period of isolation and to have very little support and without support,” she said.
The fairs added that the only organization on which she had found relying was in the United States.
“It was a life buoy,” said Fairrs.
The type of line of life which, according to her, was seriously necessary in Canada, so despite the challenges of her daughter, the fairs were summoned and co -founded Scelrose Canada Tuberous, a non -profit organization now in her 35th year.
She hopes that by raising awareness, this prevents others from feeling the same kind of isolation she did all these years ago.
The fairs said that it was only known to four other families dealing with the disease in the center of the Okanagan.
Describing Shayla as her all, Fairrs said that her daughter and his best friend, who are also struggling with health challenges, moved into a place in their own marking of an important stage.
“They have 24 hours a day care that comes into play and support two girls and take care of them,” said Fairs.
“She is very happy and it gives her a certain independence.”
The fairs want to give hope to others and make sure that people know that there are supports in place for those who live TS and their loved ones.
More information can be accessible on the Tubereous sclerosis website Canada.
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