Madeline Milave, who lives in Minnesota, was diagnosed with spinal muscular atrophy (SMA) type 2 at 18 months old in 2005. She shares how the key to SMA independence is not letting comparison hold you back.
Madeline passed away this summer. We honor her memory at SMA News Today, and we’re grateful for her sharing her wisdom here.
Transcript
For caregivers, I would say it’s OK to be scared, but also try not to be too much of a protector and more of a supporter, because it’s going to be scary for every party involved going into these new times and new challenges.
But then, as an individual with SMA, I always like to say don’t compare yourself to anybody else who even has SMA, because no matter what, it’s gonna be different for you than the other person. And so you can’t be like, Well, this person, you know, something bad happened when they tried to do this, so I can’t do it.
Don’t let that stop you. And even if someone has, like, a great experience doing something going into adulthood, it might not work out the exact same way for you. You need to figure out how to work best for you.
When I was, like, 10 — my stepdad was like, So, Maddie, where are you gonna go to college? I’m like, What do you mean go to college? I’m not going to college.
There’s no way I’d be able to do that, because I didn’t know of anyone with SMA who was in college at the time. And I was just completely like, That’s not, you know, gonna happen for me. Like, it’s basically impossible with SMA, and, you know, obviously, that’s very not true.
So it’s just kind of figuring out, you know, as you get older, seeing these people do things, but then realizing that you can’t just follow in their footsteps — you have to pave your own path.
