Racing Time - A digital story by Nikol скачать в хорошем качестве

Racing Time - A digital story by Nikol

This digital story was created by Nikol Faltysová about her lived experience advocating for her son who has Duchenne Muscular Dystrophy. Nikol co-created this story with Kristy Wolfe Learn More Kristy Wolfe https://www.kristywolfestories.com Hope for Ollie https://linktr.ee/Hope4Ollie Defeat Duchenne Canada https://defeatduchenne.ca/ Racing Time by Nikol Faltysová Fall 2025 Every time my little boy learns any new skill I allow myself to feel the happiness of him growing up. This feeling is quickly followed by incredible heartache and pain. Oliver suffers from a rare condition called Duchenne Muscular Dystrophy. These moments of celebration are short-lived. Duchenne will take away all of these wins, one by one. Just this winter I was standing on top of the bunny hill at Lake Louise. Ollie turned around looked me in the eyes and said "Mummy, you stay here. This time I will ski down by myself." I was scared to let go. What if he breaks his leg? He might never walk again. But I did it. I let him go. I watched my son reach this incredible milestone despite everything he is already facing at 6 years old. He skied down four more times. He couldn’t get enough. After he said “Mum I will be a ski racer one day!” I held back my tears and gave him a shiny smile. I did not have the heart to crush his dreams at that very moment. He deserves so much more of this. There is a drug that generally gives the boys with Duchenne between 3 and 5 more good years. It delays the inevitable decline. We want those years! At our next neuromuscular clinic, we were so excited to discuss this drug. We were right. This drug could give Ollie more time…if given soon. Unfortunately, in Canada we do not have access to this drug. By the time it gets approved and is available to Ollie he will already be in a wheelchair. As with the other 800 Duchenne families in Canada, we are racing against time. Against the loss of the ability to walk, to eat independently, to breathe, and ultimately to live. This is when my race over obstacles began. After many emails, phone calls and a conference. I found a way. Back home with my parents in the Czech Republic. We will get Ollie this drug soon enough to hopefully savour more quality time before the decline comes. But what about the other 800 boys living in Canada? Who will help them? Some would say, the drug access is only two years away. But in two years Duchenne boys between 8-10 could lose mobility, bladder control and start having heart issues. How many boys in Canada will lose all of this in the next two years? We know that Ollie will never get to race down the ski hill, but we will not stop our race for more time with our boy.