Mahek Kaur is a 15-year-old first generation Canadian with strong cultural roots to her parents’ homeland in Punjab, India. “The importance of family connections is ingrained in us,” she says. “We have huge families and we stick together.”

Mahek with her dad and mom

This holiday season, when Mahek’s extended family travels from across Canada and the United States to be together, everyone will be remembering her mom, Amrit, who died from ALS in 2017. “Her absence affects all of us,” says Mahek. “My mom was very active in bringing the family together. Now that she’s gone, maintaining those bonds is a way for us all to honour her.”

One of the many challenges Mahek and her dad faced during Amrit’s illness was a shift in the family dynamic. “My mom was very family-oriented. We were used to having our large extended family over all the time. As she lost the ability to speak, it became very difficult for us to continue hosting those family reunions. There were so many emotions and for some, it was too hard to come to terms with what was happening. For a while, it meant we were becoming distant from them,” explains Mahek. “That’s something people don’t always realize. ALS has an impact on the entire family and it can be very isolating.”

For someone on the outside looking in, it can be difficult to fully comprehend what families experience in the face of ALS. Mahek remembers feeling frustrated when people minimized the worry of leaving her mom at home during the day, even with the help of a professional caregiver. Once Amrit lost her speech, Mahek and her dad knew she would have difficulty communicating her needs to anyone other than themselves. “We used to be able to tell from the blink of an eye whether she wanted a drink of water or a cup of tea. No one else could do that for her.”

It was only after her mom’s passing that Mahek found the courage to speak out about the impact of ALS on her family and to re-focus her energy on helping others. Launching and organizing the Walk to End ALS in Etobicoke helped her find meaning. The raw pain she was feeling in the early days softened and a fierce desire to support other families living with ALS began to take its place. “At this year’s Walk, I felt more connected to the whole ALS community and less focused on my own experience. I just don’t want others to go through what we did,” she says.

“I used to be very introverted,” says Mahek. “After my mom passed away, it pushed me to be more open to raise awareness about ALS. Nobody is too young to try to make a change. I just decided to put my best effort forward and see where it went.”

Mahek is already working on the 2020 Walk to End ALS in her area. She says it’s about time to build more awareness and more empathy for families living with ALS. “It’s important that people realize even though ALS is less common than some other diseases, it still affects more families than we can count and we need to do something to stop it. It’s good to stay positive but right now, there are limited proven therapies for ALS and no cure. Sometimes we just need to be brutally honest about how horrible this disease is,” she says. “We need to get people’s attention and ask for anything they can do to support us, even if it is a small donation. Every gift counts.”

If Amrit were still here, Mahek would like to tell her about her life plan, “to live her life in her mom’s honour and make her proud.” She will continue advocating for more funding for ALS research and for more services to improve the quality of life for people living with ALS, like equipment loans and support groups. Along the way, she is hoping others will also make a choice to help end the suffering.

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