To everyone affected by SMA:

This is it. This is the time we’ve been waiting for our whole lives.

We got our miracle drug.

I know we can’t call it a cure, but from what I’ve seen so far, it’s pretty close. If you are one of those who has started on our miracle drug, Spinraza, and haven’t gotten stronger yet, don’t give up. Even if you are a parent of a child with SMA and they haven’t gotten stronger on Spinraza yet, don’t give up on them. Nothing’s impossible now.

I’ve seen kids who could barely move at all to being able to stand and even walk a few steps. I saw a little girl be able to pull herself up to standing position after a couple years of being on the medicine. And I saw another girl be able to change her clothes completely by herself. These things used to be impossible for anyone living with SMA, but this is now becoming our reality.

As a 20-year-old who has lived with SMA her whole life, this new reality is still hard to believe. I grew up thinking that nothing was going to change and that I would be as weak as I was the rest of my life. I thought that my muscles would keep slowly wasting away and that I would forever be struggling to move, eat, and breathe. And now the day has come where I can finally say, “I’m getting stronger.”

After only four doses of Spinraza, I can now lift my arms easier, swallow easier, breathe easier, and do so many little things that I couldn’t before. These little things that I have gained so far might not seem like much to others, but it has changed my life. And I’m nowhere being done.

I’m not stopping until I can do the one thing I’ve wanted to do my whole life—take care of myself. I still need people to help me with a lot of simple things I do every day and one day, that’s going to change. And even if I never get to stand later on, but I get the strength to do most of the things I need by myself, that’s good enough for me. No longer having to struggle to do simple things is a miracle. In my eyes, that’s a cure.

It doesn’t matter how long it takes for us to achieve our goals because now, it’s possible.

Don’t give up.