Sisters dealing with rare disease, a community rallying behind them.
Two little Airdrie girls have had to add two very grown-up words to their vocabulary: Friedreich’s ataxia, or FA.
FA is a rare, usually inherited disease that damages the nervous system, causes problems with mobility and can trigger other issues including potentially life-shortening heart conditions. Most children who get FA eventually end up needing a wheelchair, and there is currently no cure.
Shanna Leavitt, the girls’ mom, says that she’d never heard of FA until her youngest daughter, Addison Foley, began falling and showing other mobility issues. A battery of tests initially suggested developmental co-ordination disorder. “But when we started to notice a lot of regression with her gait, balance … the neurologist said she did not have DCD,” says Leavitt.
The doctor then did a blood test for FA. “I remember reading up on FA and saying, no, this isn’t us; the odds are one in 50,000 and it had to come from a gene from Mom and a gene from Dad … no one on either side had anything even related to it,” says Leavitt.
Then she began noticing her eldest daughter, Kadence Foley, was also showing some of the same symptoms.
In spring 2015, the diagnosis was confirmed: both Addison, now nine, and Kadence, now 11, had FA, as well as a heart condition associated with it, hypertrophic cardiomyopathy.
“So my mindframe was, OK, how do we make this work for us?” says Leavitt, a single mom who works as a dental hygienist. “With Addison, she’s struggling more with getting around and using a wheelchair more to get around. But the reality is, I can’t keep carrying her up and down the stairs – I’m not much bigger than (the girls) are!”
And that’s the challenge Leavitt faces. Looking to a future when both her girls will need mobility assistance, she realized her two-storey home in Fairways wouldn’t work. “A bungalow would be good for two little girls who are on the move all the time, regardless of what is keeping them from getting around,” she says. “Whether it be a walker or a wheelchair, I just want them to have that comfort.”
Michelle Carre and her husband and local realtor, Matt, learned about Leavitt through their Airdrie Angel program, which provides a hand up for Airdrians going through difficult times.
“What Shanna needed was way more than what our program can provide,” says Michelle. “We got a letter from Shanna’s sister, saying she needed to buy a new house. So I deferred to Matt … and he worked with Shanna to find a house.”
Leavitt admits her heart wasn’t really into the house search at first, seeing as she had to balance a job with taking care of Kadence’s and Addison’s changing needs: “That’s when my emotions set in – how can I do this, how can I make a home and carry another mortgage and renovate it?”
Staying in a familiar neighbourhood was a priority, Leavitt says, so she and Matt found a 1,870-square-foot three-bedroom bungalow in Woodside, not far from the family’s current home.
Fortunately, Michelle says, a family friend bought the new home, which will allow adaptations to be completed before Leavitt and her daughters move in (at which point the old home will be sold and Leavitt will take over the payments).
The home needs extensive work to future-proof it for when the girls’ needs change. For example, doorways and hallways need to be widened for wheelchairs, the bathroom needs to be made accessible and a ramp needs to be installed, says their mother.
A GoFundMe campaign, I’m Possible, is collecting donations to help cover the costs of the renovation – some of which, it is hoped, will be covered by grants. According to Michelle, several people have already stepped forward to help cover some of the costs, and “a number of tradespeople have reached out to us,” she adds.
The hope, Michelle says, is also to provide Leavitt with “a cushion” to help cover added costs she may encounter as her daughters grow and their needs change. A local hair salon, hairBenders, also held a fundraiser for the family last fall.
“This is where I cry … people’s hearts are so big and so giving,” says Leavitt. “I think for me, I’m dealing with the bigger picture of a disease and to have something that makes my kids smile. That’s all I want. We can’t fix what’s happened to them, but what can we do to make life great while we’re all here?”
At the same time, she hopes to raise awareness of FA, and how it impacts children like Kadence and Addison.
And with that, Leavitt gets ready to take her girls for one of their favourite activities: swimming. They also enjoy horseback riding and the two are concentrating on just being kids, with the hope that someday a cure for FA may be found.
For more information about the girls’ story, FA, and to donate, visit ampossible.org