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Marek's ALS Care Fund

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I’m raising funds on behalf of my family and, namely, my dad Marek. We are a family of four, including my mom, Dorota, my 13-year-old sister, Olivia, and myself, Sandra.

As some of you may know, this past May my dad was diagnosed with Amyotrophic Lateral Sclerosis (ALS), also known as Lou Gehrig’s disease. I will always remember the exact day it happened, May 11, because it was the worst day of our lives. Although the warning signs began surfacing back in November, nobody could have predicted this devastating outcome. Initially, we were relieved when doctors attributed his symptoms to herniated disk problems, but it soon became apparent that it was something much more serious. He underwent testing for several months with a number of specialists and after MRI and EMG results came in, we were expecting bad news; however, ALS was something we never could have imagined.

So what is ALS?

The truth is, nobody knows where it comes from. For those of you who aren’t familiar with the illness, ALS is a rare neurodegenerative, terminal disease where the nerve cells that control your muscles die. The cells connecting your brain to your muscles degenerate, leading to a loss of mobility, loss of speech and eventually impact the ability to breathe. In Canada, approx. 2500-3000 people are living with ALS and there is currently no known cure or treatment. The lifespan after diagnosis is on average two to five years.

Since my dad’s disease has been progressing very rapidly, on August 30, 2016, he was transferred to a long-term health facility with 24-hour care. Despite government subsidies, the costs of the health care facility and associated medical bills are over $3000 a month and, unfortunately, it’s something we cannot afford in the long term. That’s why we are asking you for help.

For anyone who has had the pleasure of meeting or getting to know my dad, you’d know that, before his diagnosis, you would never see him without a smile on his face. You couldn’t have a conversation without him cracking a joke, which would leave you smiling too. He’s always been one of the kindest, funniest and most positive people out there. My dad has always been there for me and now it’s my turn to try to do the same for him. We know that we can’t cure my dad’s ALS, but what we can do is try to make the time he has left as best as it can be; we can’t do that without your help. We’re not expecting to reach our full goal, but we are grateful for any help that is given. A little goes a long way.

Thank you for taking the time to read this page and please pass it along.

Much love,

Sandra, Dorota, Olivia and Marek Machula


Sandra Machula
Calgary, AB

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