Owning the day

My name is Erin and this is my husband, Kevin. We live on Long Island with our two sons, Bear, who is seven and has Type 2 SMA, and Sam, who is one and a half, unaffected.

My name is Bear. I have SMA Type 2.

I think that Bear is a joyful person because he's able to find humor in almost anything, and he loves creating his own jokes, and he loves making other people laugh. He always wants to go to a museum or an aquarium. He's always curious, always wants to see those things and do those things.

I always love playing with my little brother a lot, I just chase him around and around the house, and he, yeah, he enjoys that, and since he enjoys it, I enjoy it, and since I'm happy, Mom and Dad are happy. Yeah.

Bear likes to say when he has a great answer for something or something cool to tell you, "Put your hands on your head," which we do, and then he says, "'cause your mind's gonna be blown." And that's how I feel about Evrysdi in general. It really has blown my mind.

Bear was about four and a half when he started Evrysdi. We could start to see that having something that he could take at home, having something he could take orally, that as he became older and his own independent person, that was gonna be important, you know, play such a pivotal role in every part of his day.

We had heard about Evrysdi actually online from a friend who lives nearby. Has two children with SMA.

I did hesitate about switching to Evrysdi initially because we had finally gotten Bear to what felt like a stable and safe place, that the idea of changing anything felt really scary to me, and we did talk about it a lot, Kevin and I, and we brought it all up to the neurologist.

It was really important to have the at-home treatment option for Evrysdi, so something that we could kind of fold into the background of his life. So once we spoke to our neurologist about both options, she agreed and she had been very pivotal to our other treatment decisions.

Bear has his motor skills measured in standard testing. He does a whole slew of tests, and some of them you know, sitting up on his side. How far can he lift his arms? Can he get his hands to his mouth? Sit off the edge of something? Can he kick? Things like that. So a lot of PT testing, OT testing, being able to lift different weights until he gets to one that's too heavy. And I think that seeing those benchmarks kind of increase is really important to him. He loves being able to beat his old score and it's a lot of hard work, but you know, he gets through them each time and he's impressed by his own strength, which is important.

Yeah, so he has therapies all week, every week.

I've noticed that Bear has a lot of improved arm strength and hand strength. I've seen that in his ability to lift a cup to his mouth, his ability to write with different writing utensils, and his ability to grasp things tighter. And when people go to hand him something, you know, it doesn't just fall to his lap. He can actually take it, which has been a big change in his interaction, especially with other children. And that one's really important to him and me.

I can definitely hold myself up a lot easier. I feel like I've accomplished that.

He notices when he's able to do more things by himself, you know, thanks to treatments and getting a little bit stronger, he can get his own hand back on his joystick, which is a key piece because if he's driving around on his own, he wants to go around the other aisle of the grocery store, which is a big deal for him.

Like a seven-year-old, he loves video games, those little movements in his fingers to be able to play those games, like, it makes a huge difference. And also on his iPad, being able to reach things.

With Dad, I love playing video games with him. I love painting with Mommy.

When I think about giving Bear his treatment at home, I am always impressed. It feels kind of unbelievable that we went from really having no options to having a treatment that is in my refrigerator, that I can travel with, that he can take anywhere, that I can give it to him if he's taking a nap because it goes through his G-tube. And it's just amazing to me that something so small is having such an impact on his life.

For other families that are considering Evrysdi, of course, talk to your neurologist. I have to say, ask them anything and everything. They want to talk to you, they have the information, that is what they're there for, and don't be afraid of that. When I think about everything that Bear has been through, and how he was versus how he is today, I really am, really astounded.

So any parents that are concerned about or worried about side effects when it comes to Evrysdi, first I would say completely understandable. Whenever we've considered different treatment options for Bear, we've of course looked at all the side effects, so I think that looking at all of the options, doing as much research as possible, finding out what fits best in your lifestyle, is really important. And we've never noticed any side effects for him since the start of treatment really, so we've been looking at that.

For Bear's future, we're really just hoping that we can help kind of clear the way for him to be who he's already becoming, kind of, you know, just adventurous, and joyful and fun.

Bear has a great, strong personality and an amazing spirit, and I think we just hope that he takes that with him wherever he goes.

This is Evrysdi in action.