Kelowna mom shares difficult journey of daughter living with rare disease
A Kelowna, B.C., woman is helping spread awareness about a rare disease that has touched her family in a personal way.
May marks Tuberous Sclerosis (TS) Awareness Month in Canada, with May 15th being Global Tuberous Sclerosis Day.
'It affects one in 6,000 to one in 10,000,' Cindy Fairs said.
TS is characterized by benign tunours in the brain and many other parts of the body.
Fairs' daughter Shayla was diagnosed with TS when she was only seven-and-a-half months old.
'She had had a seizure and the doctor didn't initially recognized it as a seizure. Two days later it was a status seizure and we ended up in the hospital and we almost lost her at that point,' Fairs said.
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'She ended up going through three hospitals and ended up at B.C. Children's Hospital before she was diagnosed.'
That was 1989 and while Shayla is now 36 years old, she is developmentally at the level of a child between three and five years old.
'She doesn't know how to count, she doesn't know her numbers, she doesn't know her letters, she doesn't know my name,' Fairs said.
Fairs said brain surgery was considered when Shayla was five years old but it never happened.
'At that time they had never done brain surgery on anyone with tuberous sclerosis in Canada, so we were looking to go to California,' Fairs said.
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'We weren't able to go because of the cost to do the surgery and all of what comes with that and BC Medical would not cover it.'
Fairs said the idea was re-visited again when Shayla was 14.
'By then, surgery was happening for individuals with tuberous sclerosis in Canada but there had been so many tumours that had developed in her brain, they could not isolate them so it wasn't an option any longer,' Fairs said.
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Fairs said thinking back to when her daughter was diagnosed in her first year old life brings back difficult memories.
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'When I think about it, it takes me back to a time of isolation and having very little support and no support,' she said.
Fairs added that the only organization she found to lean on was in the United States.
'It was a lifeline,' Fairs said.
The kind of lifeline she said was badly needed in Canada, so despite dealing with her daughter's challenges, Fairs got to work and co-founded Tuberous Scelrosis Canada, a non-profit organization now in its 35th year.
She's hoping that by raising awareness, it prevents others from feeling the same kind of isolation she did all those years ago.
Fairs said that she is only aware of four other families dealing with the disease in the Central Okanagan.
Describing Shayla as her everything, Fairs said that four years ago her daughter and her best friend, who is also dealing with health challenges, moved into a place of their own marking an important milestone.
'They have 'round-the-clock care that comes in and supports there two gals and looks after them,' Fairs said.
'She's very happy and it gives her some independence.'
Fairs wants to provide hope to others and ensure that people know there are supports in place for those experiencing TS and their loved ones.
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More information can be accessed on the Tuberous Sclerosis Canada website.
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