York Region WALK for ALS


Family posing together on the beachBrigitte Bailis is described by her three daughters as a friendly and easygoing woman that was more of a friend to them growing up than a mom. As someone who liked to run, salsa dance, cycle, and try new things, Brigitte was the kind of mom that her daughters wanted to go for coffee with. As time went on, Debbie, Stephanie and Laura have had to make some changes to their mother-daughter relationships, but the love they share is strong as ever.

Brigitte was diagnosed with ALS in 2012, news that came as a complete shock and led to some challenging emotions for the entire family. “I experienced all stages of grief,” says Brigitte. “But what I learned was to take nothing for granted.”

The experience of living through an ALS diagnosis has taught Brigitte that “little things matter.” For example, having and losing the ability to pick up a glass of water. Her main regret is living with all the excuses she made prior to her ALS diagnosis for not doing the things she really wanted to do; excuses such as lack of time or money. However, through all the ups and downs that come with a terminal disease such as ALS, Brigitte and her family have learned to live for the moment and embrace the things that make them smile.Woman living with ALS laying in bed with dog

For Brigitte, one of those things is a special little dog named Wally. Wally is her daughter Stephanie’s dog, and is just as much a part of the family as anyone else. In fact, Wally will be joining the Bailis family at the York Region WALK for ALS on June 3.

Three sisters standing side by sideWhile Laura is on the local WALK for ALS volunteer committee and helps to plan and coordinate the event, Stephanie helps on the day-of, greeting participants as they arrive and collecting donations at the registration table. As for Debbie, her role is to lead the group in a Zumba warmup, something that always reminds her of her mother’s zest for life.

“My mom took me to my very first Zumba class,” says Mother and daughter huggingDebbie. “And now I run a fitness company with my friend, Kelly. It’s all thanks to my mom.” For the Bailises, the WALK for ALS is truly a family affair.

“Our mom always put everyone first,” says Laura, “and she continues to do so even while living with ALS. She’s caring, generous, and always makes sure we’re OK. It’s why we all wanted to get involved in the WALK for ALS – to do something for her and raise awareness for all the people and families living with ALS.”

As the child of someone living with ALS, one of the biggest challenges can be the loss of identity and shifting roles within the family. As all three sisters can attest, ALS has affected the mother-daughter relationship the most because they’ve “moved away from being children to being caregivers.” Still, they adapt, focusing on keeping Brigitte’s spirits up and helping her to remain positive.

“The WALK for ALS is a big part of how we all stay connected,” says Stephanie. “There’s something beautiful about all these people coming together for the same cause – it’s a feeling that we’re not alone and there are others out there who are going through the same thing and are passionate about creating change.”

Mother and daughter taking a selfieDue to her loss of mobility and the need to find accessible transportation to and from the event, the WALK for ALS will be a physical challenge for Brigitte. However, the entire family is committed to making it work, with much-needed support from the ALS Canada equipment loan program and one on one support from their Regional Manager, Sarah.

“As challenging as it has been living through the ALS journey, we could not have done it without the support of ALS Canada and the love of our family and friends, “ says Laura. “The WALK for ALS is a safe place where we can all feel supported and connected, and work towards something bigger than ourselves.”

 

The WALK for ALS takes place in over 90 communities across Canada until September 2018. Register or donate to a WALK near you at www.walkforals.ca. Donations for all WALK for ALS events are being accepted until December 31, 2018.

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