Transcript

OK, let's see what, if anything's changed because we wrote this when you were six. There are many ways that we are just like you. There are also ways we are different. Donkey and I have Duchenne muscular dystrophy. Our muscles might not be as strong as yours, but we overcome obstacles every day. I'm Sarah Kasner. We live in Minneapolis, MN, and we have two boys with Duchenne. Before the boys were diagnosed, we didn't know anything about Dushan. We vaguely knew what muscular dystrophy is, but probably to the knowledge of anybody else. A lot has changed in the past five years, a lot more probably than I think either of us would have anticipated. Our kids became non ambulatory fairly early. Dunkey lost his ambulation at 9 and Caleb I think was 8. It's like it all happened so fast, adding all of the medical equipment. First we have one type of wheelchair and then we need the power chairs and then all the other things. So a lot has changed. It is from the time they wake up kind of all hands on deck. I usually go with one kid, Dan goes with the other. Then we go on with our day and I would say it's the same thing At night we have, we say a Hod, which means all hands on deck. It's been lately just more challenging to even get them out and about. They have different wheelchairs now even and to get them into the handicap van is can even be a struggle, you know, getting them in. You see the park and I don't even look at the park anymore. I mean, it's not something that we ever go to and we used to do that. When they're eating Caleb in particular, I notice just the way that he has to like, hold his fork or scoop up things. It's like a spoon is heavy it. Can you imagine? So we adapt. Like I always pause and feel sad and then I'm like, OK, now I'll we'll always just like, do you need a plastic fork or a plastic spoon? But things like that, you know, you never think well, actually. Happen and then here we are. Both Caleb and Donkey have gone through clinical trial screenings and both were denied for various reasons. So right now we're not on any treatments that are going to help. The disease is definitely. Taking. A hold of them. There are definitely things like looking at pictures or memories that will trigger some emotion. What is your name? Yeah, I went back and watched about 3 minutes, saw them running around and I had to stop. Yeah, that isn't stuff I can handle very well. I can put each day in its own little packet and go on to the next one and it doesn't seem like anything is really changed in my mind. But when you start looking back on photos and videos and. Seeing what it's done to them, it's tough. We were told that this disease will look different for your kids. Like hands down no, we are on the brink and it does not look any differ. I often find myself on runs like. Doing the math of how old I'll be when they're 20, and I think about how old they'll be when I want to retire and like, will they be here when we're living retirement together? Those are the hard things I calculated in my mind. This is such a variable disease. I mean, you hear of kids passing at 12 and others that are thriving maybe and they're 30s. Maybe there's some beauty in not knowing as well. Like it really forces us, I would say, to live every moment for what we have. Not that we don't still live with grief, but there is still. Beauty in our lives. We don't sit at home and cry every day. I literally thought we would. And I think we just continue to look for answers and look for things. For the best medical care, it still sucks, but you're you know, either way, we wake up and smile and. Look for smiles from them. It's really important, especially with this type of disease, that we're like all in this together.