This is a photo of my cousin Carol and I in Byward Market when I was visiting from Vancouver in the summer of 2013. It was taken just months before Carol was diagnosed with ALS, Amyotrophic Lateral Sclerosis (also known as Lou Gehrig’s Disease) – a motor neuron disease that gradually paralyzes people because the brain is no longer able to communicate with the muscles of the body that we are typically able to move at will. Over time, as the muscles of the body break down, people with ALS lose the ability to walk, talk, eat, swallow, and eventually breathe.
Carol was diagnosed on September 19, 2013 – she was given anywhere from two to five years to live, with a disease for which there is no cure. You may not hear much about ALS, and one of the reasons is because for every person that is diagnosed in a year, a person previously diagnosed dies. As a result, there is never a large group of people living with the disease in Canada – and far too many people dying from it.
Carol describes September 19, 2013 as the day she was handed a death sentence. One, I’m grateful to be able to say, that she is still outliving. On September 19 of this year, less than a month ago, Carol made it to 5 years living with ALS. She’s one of the lucky ones. Others are not so lucky - as you may be aware, long-time Member of Parliament Mauril Belanger was diagnosed shortly after the 2015 election, and died only a few months later.
One of the many reasons I decided to move to the NCR was to be able to spend more time with Carol, who is such a wonderful person – so vibrant, positive, and full of life despite the circumstances. To see her battle this deadly disease on a daily basis…well, donating to the ALS Society for the 2019 ESDCCC is one meaningful thing I can do to help Carol and others facing a similar fate.
I was really happy to see that the ALS Society is one of the 16 Health Partner organizations in the campaign. It’s also great to know that the admin costs of donating are low, because I know after the Ice Bucket Challenge the ALS Society has been trying to come up with a low-cost awareness campaign. And though I was given the option to keep my donation anonymous, I chose to let the ALS Society know that I was donating, because I’m proud of my cousin and all of the work she is doing to raise ALS awareness.
Carol works incredibly hard despite her body slowly shutting down on her. She is an active spokesperson for the ALS Society of Canada, and has been involved in many ALS Awareness events like the flag raising at Ottawa City Hall for ALS Awareness Month in June, being the Lead Walker for the ALS Walk two of the past four years, and a spokesperson for the ALS Society at the House of Commons ALS Caucus.
If you want to get to know more about my cousin Carol and her life with ALS, please feel free to visit her website, where she has been documenting her journey:https://www.livelovelaughwithcarol.com/
Carol is why #iGive, and for me she is the reason the ESDCCC is so important. I encourage each of you to think about the issues that matter to you, and to donate to those causes during this year’s campaign.
Thanks for your time,