Hi I’m Tim Gillen and I’m the founder of The Everett and Austin Project. That’s the names of my boys Everett and Austin.
And they were born in 1994 and 1996 and both boys were diagnosed with Duchenne Muscular Dystrophy (DMD) in 1997 when they were three years old and one year old.
And all through the years that they lived, you know, we saw them lose, gradually lose, abilities – from being able to walk, to being able to brush their teeth, to being able to feed themselves.
And in the end it was…they couldn’t scratch their eyebrows even. I remember getting woke up with Everett’s doorbell one time…at 3:30 a.m., and and I all he wanted to do was scratch his eyebrow, it was bothering him in the night…
So…but, both boys taught us all a lot…Everybody who knew them and everybody who gets to know them now…
They teach us about what’s important in life. I’m a big baseball fan and you know I love the Yankees and and I love to play softball still. And but you know that wasn’t very important to them.
I remember about ten years ago in 2008. I asked Everett, do you ever wish you could ski? And he says, “NO! That would hurt!”
And you know I paused and I didn’t try to explain what I meant. I just kind of took what he said and thought about it. And, he he was fine with how he was. As disabled as he was, he was fine with that. And he didn’t want to change. He didn’t have any desires to be able to be well bodied enough to ski.
You know which, for most of us is just you know. We don’t even think that way. We think oh I want to I want to play baseball, I want to hit home runs…dah, dah, dah, dah, dah…But they didn’t really care about that.
I remember like a year or so before Austin died. He died in 2012 so this had be like 2010, 2011. And we were in their mom’s kitchen, and crowded with their power wheelchairs.
And I remember talking about the Yankees, how Jeter had done something, or I don’t know the Yankees had won. And I was teasing them, razzing them, because I knew they didn’t care. I said about, you know I told them they won, or whatever.
And they’re like oh great thanks Dad. And Austin, he was such a kidder – he says, “Dad you know I just don’t get it why people want to run around in a circle just to get back to one, the same spot, I don’t get it!”
And you know we all we all had a laughed about that. But, basically in a nutshell, that those two stories kind of tell you you know contentment, and you know just regular enjoyment of life…