From the beginning of our fundraising and ‘Tacos for Trey’ events, people have taken a chance on us. Save on Foods, Happy Planet, Blue Goose Cattle Company, Bobs & Lolo, Cafe con Leche, WestJet, Shire Pharmaceuticals, to name only a very few (there are literally hundreds of people and companies who have taken a chance on us).
Recently, a number of people have taken a chance on our Gala. And it never gets old. The gratitude I feel for people who decide to get involved with our cause is such an awesome feeling. When there are so many other things they could be doing or other causes they could be supporting. Thank you, for taking a chance on us, from the very depths of my heart.
As I get deeper into the event planning world, I am finding out that it is a business. As much as I am in it to find a cure for my son’s disease, event planning is a business. Companies, people, speakers, and performers get approached for donations, sponsorships, media partnership and performances daily. So when these people, who are part of this business, still choose to get involved with us, even though everyone and their dog is asking them for something, their generosity reaches all the way to my heart, and gives me pause.
How to put it into perspective… Trey is my son. I would die for him. And right now, with this Gala, I am doing everything I physically and emotionally can, to find a cure for his rare and progressive disease. You see, every day, I watch Trey. And his disease. Many days don’t have big bumps in the road, but his disease is progressive. So, to put it lightly, I watch his disease progress daily. I watch him struggle to learn skills that my other kids learn with ease. I have learned that singing catchy songs makes it easier to remember how to hold scissors or that the ability to draw horizontal and vertical lines is easier and is a skill that is acquired before the ability to draw lines on a diagonal. I have learned that when a child with Hunter Syndrome (aka. MPS II), like Trey, is diagnosed with severe carpal tunnel syndrome and his nerves may be permanently damaged by now, which means loss of muscle and function of the hand, his doctors may not do surgery because the build up of scar tissue due to repeated surgeries (Trey has already had one bilateral carpal tunnel release in 2008) may cause more damage than doing nothing. However, none of these decisions are made with certainty because of the rarity of the disease.
So, when people take a chance on us, they are doing more than just saying yes to giving up a night of their life. From a mum’s perspective, you are giving all the families with Hunter Syndrome (and other diseases Hunter Syndrome research will affect) hope. That their kids will one day learn to use scissors without having to break it down into songs, how to draw lines on a diagonal with ease, and without having to make an impossible decision to do surgery and potentially cause more damage or not do surgery and watch, over time, the complete loss of hand function.
Who’s taken a chance on us? Dirty Radio. Kid Carson. DJ Flipout. Chris Gailus. Britt Janyk. Will Blunderfield. All the actors on our Special Guests page. These are people who get numerous requests and among all those requests, have, for some reason, chosen to give up time for us. There are also the people who have been on board with us from the beginning of our fundraising, of whom there are too too many mention (although I will put in a special plug for Amy Beeman because although she’s been on board from the beginning, she’s helped me make a number of connections for this Gala that I would otherwise not have made. Thank you Amy!). There are also companies (who have people behind them) who have taken a chance on us: Shire Pharmaceuticals, Carats Diamonds, Whistler/Blackcomb, OOXX, The Sutton Place Hotel, and the list goes on. And then there are our volunteers, who are giving up time every week for our cause. Which blows me away. Everyone is busy. Yet, I have found people who are willing to get even busier, for our cause. I am so fortunate to have met you all.
I could write an essay or even a thesis on my gratitude to everyone who has taken a chance on us. You have no idea how touched I am by your donations of time, money, support, all of it. Thank you. Your generosity has become a part of me and will be with me for the rest of my days.