Patient Voice spoke with William Aiello to learn more about Mario La Valle and his incredible accomplishment.
Can you tell us a little bit about yourself?
My name is William Aiello and I’m the CTV News Kitchener weather anchor. I grew up in Ottawa with most of my focus on sports, playing hockey and lacrosse throughout my entire childhood and teenage years. I started at Bell Media Ottawa seven years ago on the part-time promotions team, and I’ve climbed my way up. I’m beyond grateful for what I’m able to do every day. Whenever I’m not in the newsroom or shooting fun segments, you can find me in the gym, on adventures, or playing with my wonderful pup Jax.
What can you tell us about Mario?
Mario La Valle was my brother-in-law, but you could easily remove the “in-law” as he was a true brother to me. When you think about someone who shines a light into your life and has a smile that changes your mood, that was Mario. He was someone so special that his presence uplifted everyone around him. I was always protective of my sister and she and I are extremely close. From the first handshake with Mario, I could tell I would never need to worry about my sister’s happiness again. The amount of love, knowledge, and care he showed to his friends and family was and still is inspirational to me. He would make my brother and me look bad by getting up with my dad at 5 a.m. to help him cut the grass, make us laugh in difficult situations, and, most importantly, be just as goofy as I am on a daily basis. Most importantly, he lived to help others.
What is your connection to rare disease?
Mario passed away from an extremely rare cancer called epithelioid angiomyolipoma in 2019. Even when I think about it to this day, I honestly still can’t believe that he’s gone. A big part of me had a hard time dealing with the likely outcome, even given the prognosis. Truthfully, I was so blind to the challenges that rare disease patients face before I experienced it firsthand.
What inspired you to create Paddle with Purpose?
After seeing what my sister and Mario had to go through, I had a vision of doing my part to help others in similar situations. When coming up with Paddle with Purpose, I knew it was essential that I did something that would draw attention and help create awareness, which is how a 24-hour stand-up paddle came to mind. All Mario ever did was help others and I wanted to do something in his honour that would make me take life lessons I learned from him and turn them into something he would be really proud of. It really was a flick-of-the-switch time for me and I had to help.
What did you learn from the experience?
The 24-hour paddle has given me so many life lessons. One was to be able to train so hard for months and stay consistent, with every decision being based around one question: “Will this help me with the success of my paddle?” It wasn't just the training but understanding how much emotion was behind what I was doing and being able to process it — it felt like I had a superpower.
Many people ask me what the hardest part was and I can’t give an answer. There were no moments of doubt, no feelings of weakness, and no thoughts of stopping. I was so dialed in and could feel Mario with me every paddle of the way, even though I know he threw in some tough winds just for me. The true power that we all have both physically and mentally is mesmerizing. Above all, I learned that we’re all capable of amazing things.
You chose to donate all proceeds to the Canadian Organization for Rare Disorders (CORD). Why did you choose CORD?
When I had first brought the idea to my sister Victoria, I wanted to choose an organization that she thought would be a good match with what our family had been through. CORD was brought up and it stuck with me. I was also aware of the great work that they did with a young man named Jonathan Pitre, who suffered from recessive dystrophic epidermolysis bullosa. He was someone who I had the pleasure of meeting and I was amazed by his strength. It was clear that so many people needed our help and the decision to support CORD was an easy one.
What kind of influence has this fundraiser had on your life? Has it changed your perspective?
This journey has honestly changed my life in more ways than one. It’s given me an understanding of what it’s like to live with purpose. It’s in these adventures that you can see the love and support around you and who’s really in your corner. The outreach from family and friends, as well as viewers and spectators, blows my mind to this day. The world is filled with generous and loving people, and sometimes we need to be reminded how impactful we can be when we come together.
There were so many moments during the paddle that are hard to explain — a sort of energy and mindset that you can only get into while going through something so challenging but meaningful to your heart. Those moments, shared with a couple members of my support crew, will stay with me forever. Life has been so backwards over the past few years, but there were hours during the paddle where the entire world was shut out and the only things that I thought about were Mario and moving towards the finish line. I have memories of striking my paddle down, feeling utter joy, but also a powerful sadness and gratefulness.
What’s next for you and your family?
As we continue to live our lives, there will always be a big part of our family missing, but we also know that Mario’s with us every day. For me personally, I’ll continue to live each day with the goal of creating positivity and love around me. When these terrible times happen, it forces you to constantly think about what’s really important to you and how surrounding yourself with loved ones is all that really matters. Each and every day, I’ll do my best to be more like Mario and to be someone that he and my sister can be proud of. This is only the beginning of my long journey when it comes to giving back to Canada’s rare disease community.
What should Canadians know about rare disease?
Until it becomes personal to you, I don’t believe that the majority of us understand what millions of our fellow Canadians are dealing with. From day one of the fundraiser — in describing what I was doing and why, virtually no one I spoke with knew about CORD or that approximately one in 12 Canadians live with one of over 7,000 rare diseases. These amazing, resilient people are our friends, our family members, and our neighbours, and each day we need to remember how far compassion and empathy can take us. We need to get to a place where people are aware of these situations before it hits close to home.
CORD is Canada’s national network for organizations representing all those with rare disorders. CORD provides a strong common voice to advocate for health policy and a healthcare system that works for those with rare disorders. To learn more about CORD, or to donate, click here.