Three years ago, I met Mario through my daughter, Mercedes, who was hired as one of his personal care assistants. Mario has ALS…amyotrophic lateral sclerosis or Lou Gehrig’s disease. He has had ALS for 25 years…one of Canada’s longest ALS survivors.
One of the first things Mario said to me after introductions was, “How is your mother?”. I was speechless. Looking at Mario sitting in his wheelchair, breathing through a mask and tube (which I later learned is called a BiPap valve), speaking through my daughter who was reading his lips and eyes, he was concerned about me and my mom. This was the first indication of what I have come to discover and love of Mario’s incredible empathy and compassion for others.
Mario needs 24/7/365 care. He can’t walk; he can’t talk; he can’t eat; he can’t breathe. However, he can think; he can feel; he can love. The physical demands of caring for Mario are vast. From assisting with his daily living activities like bathing, eating and dressing to managing his feeding device, his breathing ventilator, his wheelchair and his specifically customized van, his team of specially trained people are there for him.
The cost of caring for Mario is also vast; this is why we are asking for your help. Mario needs a new van. His current one is no longer reliable. One memorable experience Mario and Mercedes had occurred last summer. They were on their way to a meditation class in downtown London. The remote on the door hadn’t been working for a while. Mercedes tried to open the door manually, but it wouldn’t open…Mar (as friends refer to him) was stuck inside. She called the dealership and was advised to “pull up on the door and then pull as hard as you can” thinking the door was just off the track. The door came right off in her hands. Try to imagine, if you could, a 21-year-old young woman with sole responsibility for a man in a wheelchair, stuck on the side of a street in downtown London in the heat of the summer, with an inoperable vehicle. Thankfully, all ended well, when an hour and a half later the van was towed, and they arrived home in an accessible taxi. Needless to say, Mario did not make it to his class.
Mario needs reliable transportation because he likes to go out: to visit friends, to go to classes and appointments, to attend concerts, to cheer on the London Knights, to go to church, to play euchre and to just generally live as normal a life as possible. A new wheelchair accessible van costs $70,000. This expense is above and beyond his regular daily expenses of a personal care assistant, a nightly nurse, specialized nutrition needs, medication and a wheelchair.
Speaking of Mario’s wheelchair, it is on its last ‘legs’. It recently incurred a repair cost of $7,000 and is still not functioning properly. The electronic mechanism that allows Mario to ‘stand up’ is overextending. With his razor-sharp wit, Mario likens this to being projectile ejected without a net. Because of its age, emergency service is no longer available. A new wheelchair would also give Mario access to leading edge technology allowing him to maneuver his wheelchair himself via his mouth. It could cost upwards of $50,000. These costs are carried solely by him and his family.
Mario lives with his mom and dad, Sandra and Fred Vella. They devote their lives to caring for Mario. I believe they are angels sent directly from the right hand of God. When you walk into their home, you are immediately embraced with a feeling of welcome and generosity. They are in their early eighties and are wondering about care for Mario as they get older.
This family didn’t ask for this, but they have learned to accept and live with this motor neuron disease. Each year, they hold two separate fundraising activities, a dinner dance and a golf tournament, to have fun, and to help offset the immense costs to allow Mario to live a happy, normal life. Check out Mario’s website at www.mariosvictoryagainstals.com for details on these events.
Yes, the cost of ALS is huge. Couple this with an even bigger emotional toll, and the impact on a family can be overwhelming. We are asking for help to support “Mario’s Victory Against ALS”!
- Ted Gauci
- Darlene & Bruce Turner
- Jane Engels
- Diana Doherty
- Kimberley Merucci
Organizer and beneficiary
#1 fundraising platform
More people start fundraisers on GoFundMe than on any other platform. Learn more
In the rare case something isn’t right, we will work with you to determine if misuse occurred. Learn more
Expert advice, 24/7
Contact us with your questions and we’ll answer, day or night. Learn more