May 5, 2008 mcfadyena

Tacos for Trey!!!!!!!!!!!!!


A picture taken outside at our "Tacos for Trey" fundraiser

I still have a smile on my face from Saturday. How can I not? The number of people who supported us is unbelievable. I don’t even know where to begin (if you want to start with the sap, read the bottom first).
How about food and drink donors. Blue Goose Cattle Company donated 80 something pounds of organic ground beef (I don’t even want to know how much that would cost to buy). Happy Planet donated 370 juices (Trey & Ave get 1 Happy Planet juice each after Trey’s infusion on Monday’s, which costs over $5, so I can only imagine how much that would have cost to buy… and their juice is so tasty and healthy). Molson donated 12 dozen beer (we all know how much that would cost to buy :)). Que Pasa Mexican Foods donated fresh salsa and organic chips. And Save on Foods donated everything else. Produce, taco shells, pop, water, beans, cutlery, cups, napkins… name it. They make it so easy for us and everyone I have worked with from Save On is so friendly and helpful!
Now onto raffle and auction donors. We gave away dozens of of raffle items and there were 72 auction items, all of which were donated. I just do not have room to thank everyone who donated items for the raffle and auction, so if you were one of the amazing people who donated, please know we are so grateful. It was such a cool auction, I wish I’d had the time to bid on more stuff!
Entertainment… BOBS & LOLO!!!!!!!!!! If you haven’t heard their music, go to: They are awesome and wow did everyone love their performance. One of our friends, Asher, is such a die hard Bobs & Lolo fan, I can’t help but laugh when I see him making sure everyone is following along with the words & actions & paying attention. They were definitely a highlight of our event and I am so grateful they were able to perform.
The massive bouncy castle was a big hit for kids too (I had some adults request to go in, but there just wasn’t enough room!). I knew the kids would like it, but I’ve never seen so many kids go so crazy for something. Crafts and face painting (thank you Avrell & Shannon!!) were other things the kids spent a lot of time at.
There are just so many people to thank. Our volunteers were amazing. My mom and sister stayed up into the wee hours of the morning every night in the week leading up to T4T, my dad, my aunt, my mom, my grandma, and my mom’s friends picked up all the food, drinks and rentals, family and friends were at the school late Friday night and early Saturday morning setting up, and SOOOOOO many people helped during the event. Thank you!
And to all the people who came to the event, wow. It was amazing. We filled up the school gym and then some. You helped us raise $18,000. More than last year. You touched our hearts. When Ry and I got home that night, one of the things that came up was the disappointment from people who mean a lot to us and did not come. During that conversation, Ry said: “They don’t know what this means to us. They haven’t been through what we have.”
You really don’t know what you coming to our event means to us and unless you’ve been where we are, you probably never will. However, I will try to express our feelings in words: When Trey was first diagnosed, and for the first year, we were pretty much always crying and always overwhelmed. There wasn’t a minute that went by that MPS didn’t cross our minds.
Then Trey started ERT, we held our first T4T fundraiser, and we were told Trey’s brain would likely be okay. Things were starting to look awesome.
Then Trey had hernia surgery and a month later the hernia popped back out. Then he got another, different, hernia. Then Trey’s ear tubes fell out and he needed new tubes. In the span of 3 monthes, Trey had 3 surgeries. We were in a bit of a rough patch.
But since Trey’s ear tube surgery on October 1, 2007, Trey’s health has been awesome. No surgeries… nothing medical (other than infusions), really. Sadie was born, we were planning our next great fundraiser, and again, all was good.
About a week ago I saw a cardiology report of Trey’s for the first time, done back in January. I really don’t know what it means, and I am waiting for his doctor to interpret the results for me, but there are a lot of words on the page. And that scares me. And although I don’t know if anything is actually wrong, it is a reminder that Trey has a progressive disease. And that we need to find a cure. And that although Trey was diagnosed over 2 years ago, this isn’t over for us and never will be.
This is our life. I realize and some part of me understands that for others, life goes on without MPS. But ours doesn’t. I guess that is what is isolating for me. We don’t go away for more than 7 days at a time because we don’t want Trey to miss an infusion. I spend half the year working part to full time, organizing a fundraiser to find a cure for my son’s disease. BC Children’s is almost a second home. MPS is a central part of our lives.
So all of you coming to Trey’s fundraiser… it showed us we’re not alone. We have people around us who recognize this is not over for us. Many of you changed your plans, or took float planes to be on time, or drove from different parts of the country to be there. It showed us you care. Knowing that Trey is going to be okay and knowing that we have people around us who will stay with us and join us on this journey, that is what makes this journey okay. If given the choice, I never would have picked this path, but Trey and Ryan and Avery and Sadie and all of you who support and love us, make this a pretty darned awesome road to be on. Thank you so very much. We love you.


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