Madeline Milave, who lives in Minnesota, was diagnosed with spinal muscular atrophy (SMA) type 2 at 18 months old in 2005. She shares how she addresses being doubted in medical settings.
Madeline passed away in the summer of 2025. We honor her memory at SMA News Today, and we’re grateful for her sharing her wisdom here.
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Transcript
I explain from my perspective, and one thing that they tend to do is like, I know how you feel. And it’s like, no, you don’t know how I feel because you’re not in my shoes.
So I try to explain, like, exactly how it feels in my shoes to give them a little bit more of my perspective of what I’m going through to hopefully not change their mind, but, you know, reason with them a little bit easier.
So I feel like a lot of that happens in the ER a lot of the time because I feel like — so an example for me, I went in and I was like, I think I broke my foot. Please just help me. And they were like, well, how’d you break your foot? And I told them, and they were like, that’s not going to break your foot.
OK. But my body is different than your body. And they were like, well, let’s just see if it heals, give it a couple of days, and then if it doesn’t heal, come back.
And I’m like, no, that’s not how this works. You need to give me an X-ray, just like how you give anyone else an X-ray if they came in here saying, I fell off of a ladder, I think I broke my foot. Just because I think I broke my foot by hitting it slightly doesn’t mean it didn’t happen.
So then I, of course, had to, you know, say my entire history of I’ve broken my ankles so many times from just them being extended too far. And they take the X-ray finally, and ta-da, I had a broken ankle. So it’s just things like that.
