Community bands together to help

151223 Community bands together to help 1

An Airdrie family’s future changed forever when in the spring of 2015 Shanna Leavitt learned that her two daughters, Kadence, 11, and Addison, 9, have the rare genetic disease Friedreich’s ataxia or FA.

FA is a genetic neuromuscular disorder passed on from both parents that causes muscles to deteriorate. It usually occurs in children between the ages five and 15. It has no cure.

The disease affects “the use of your legs, your arms, your ability to speak, swallow, see or hear,” said Shanna. “It also comes along with a progressive scoliosis and some people get diabetes, and a life-shortening heart condition comes along with it as well.”

Kadence, who says she doesn’t necessarily understand the disease, said, “I know it affects everything except for my brain, so when everything stops working, I will still be thinking.”

Shanna said having the diagnosis was the first step for them.

“This is our new normal, this is the way our life is … but I am still very lucky to have these two girls and be their mom.”

The family received an anonymous donation that made it possible for the family to buy a single-level home they can renovate to fit the family as well as the wheelchairs the girls will require.

“This anonymous donor has purchased it to allow us the time for renovation,” said Michelle Carre, co-founder of the Airdrie Angel program with her husband Matt.

“I don’t know how to thank my angel donor enough …  how to find the words, it is an amazing thing and we are beyond grateful,” said Shanna.

151223 Community bands together to help 2

Scott Werenka, owner and general contractor for WPI Renovations, left, Matt and Michelle Carre, founders of the Airdrie Angel program, and Shanna Leavitt and her two daughters Kadence, 11 and Addison, 9 celebrate the anonymous donation in the holiday season.

A single-level house is not the only thing that will change for the family. A multitude of renovations will need to be undertaken for the family to be comfortable.

“We are going to basically change the whole house and give them the space that they require to move around, no stairs in the house is an important part,” said Scott Werenka, owner and general contractor for WPI renovations. “Bathroom sinks (for example), wheelchairs can’t go underneath a standard bathroom vanity.”

Through the help of the Airdrie Angel program, the family has raised over $8,000 so far through online donations.

“This community comes together time and time again,” said Michelle. “We support our citizens and we support our community as a whole, and I have no doubt that they will come together again.”

Only one in every 50,000 people has FA, making this family a rarity. Shanna said repeatedly that she can’t thank her family, friends and the community enough for their continued support.

“The strength that you have seen in this family is quite amazing and how they are rallying around the girls and doing whatever they can for the girls,” said Matt. “It is definitely about doing what is right for an eight and an 11-year-old, but what is right for their mom and making sure she is taken care of. They all have a long, long road ahead of them, and we want to do whatever we can to make their life as good as we possibly can.”

The family gets possession of their new home on April 28.

Source: http://calgaryherald.com/health/family-child/community-bands-together-to-help-airdrie-family

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