Nearly four years after their father and uncle were killed in shooting, an Alberta family is now struggling with a rare disease diagnosis.
Sarah Sansom says she started noticing her daughter, Cierra, was clumsy when the girl was about three or four years old.
The Nobleford, Alta., woman says she didn’t think too much of it until her daughter started falling down as she got older. Her balance progressively got worse.
Sansom’s husband, Jacob, was killed on a rural road north of Edmonton in March 2020 while out hunting with his uncle Maurice Cardinal.
The pair was chased and gunned down by a father and son who had claimed they thought the men were going to rob them.
After that, Sansom says Cierra’s condition deteriorated quickly but that doctors blamed the symptoms on trauma.
“We had another neurologist who brushed off, kinda told her she was faking it,” Sansom told Global News.
In November, they met with a pediatrician in Lethbridge who sent Cierra for a spinal MRI.
“She’s had brain MRIs before but they never did spinal,” said Sansom.
It came back with a diagnosis of Friedreich’s ataxia. Cierra’s doctor estimates its prevalence to be between 500 and 1,000 people in Canada.
With symptoms often starting in childhood between the ages of five and 18, Friedreich’s ataxia progresses at different rates in different patients.
The neurological disease often causes people to have difficulty moving. It can cause heart disease, diabetes and a loss of vision, speech and hearing.
After struggling for years to find a diagnosis, Sansom says Cierra is happy to have one despite the prognosis.
“She’s like, ‘Mom – the only thing I’m sad about is that I’ll never dance again,’” Sansom said of her 16-year-old who struggles to walk.
There is no cure for Friedreich’s ataxia and while treatments have been approved elsewhere, there are none in Canada.
Sansom says she found a clinic in the United States that provides treatment called Skyclarys but was told it would cost $370,000 USD each year.
The mother of three already works two minimum wage jobs after the death of her husband.
“On top of court to Edmonton I’ve got to go to Calgary for children’s hospital, I’ve got to do physio appointments, speech appointments on top of my other kids and (Cierra’s) counselling and my own counselling and it’s just a lot. It’s a lot,” said Sansom.
She is hoping to raise awareness about the rare condition so that Health Canada approves a treatment.
A friend has set up a GoFund Me to help the family cover medical costs.