NATALIE: My son Eli has SMA Type 1. The signs and symptoms of SMA for Eli, I think were present at birth. We just were not aware of what it was. The day that we brought him home from the hospital, I remember pullin’ over on the side of the road and having to pick his head up. And the morning that I called the physician’s office they said, “You know, just bring him in. Let’s check him out. Let’s kind of put this to rest.” So I did. I took him in and they said, “Yeah, we’re kinda on board with you. Something’s wrong.” My world stopped the day that we got diagnosed. I was scared.
JANICE: I was home one day and I was scrolling through, just typing in SMA support groups, and there was this one support group that told you to invite new members.
NATALIE: There was a listing for clinical trials. That was when we first heard of it. She asked me like 20 times, “Did you call ‘em, did you call ‘em, did you call ‘em?” I finally did talk to ‘em and they gave me this little tiny bit of hope, I was so excited. I’ll always remember the day that we chose ZOLGENSMA. My son Eli received treatment with ZOLGENSMA at approximately 4 months old. I think the very first time that I realized it was working, he sat up all by himself. I knew at that point my wish had been granted. He was gonna be able to hold his head up and see the world.
Eli does occupational therapy, physical therapy once a week. He actually does aquatic therapy, too. We hardly ever have any uneventful days. We eat breakfast. We play. We play a lot. He does what every other kid loves. The one thing I want people to know about ZOLGENSMA is, it changed my whole family’s life.
ELI: My name is Eli, and I’m 5 years old. When I grow up, I want to be a cooker.
NATALIE: I think from the time that we got the diagnosis of SMA up until this point, I find myself on occasions to having to pinch myself. Some things that he’s doing today, his head control’s gotten a lot better. His core strength is getting better. It gives him a little more independence. He can read. He can do math. He has an 8-year-old sister and he keeps her on her toes. So that’s been one of the biggest things that I’ve seen evolve. He’s growing up. And he’s becoming more aware of what’s going on around him.
Even though we received treatment with ZOLGENSMA, SMA continues to affect us every day. The weakness in his legs, I have seen gradually get stronger. I feel like it is a slow process. He cannot bear weight till this day. We’re still workin’ on it with physical therapy. We have good days and bad days. We still have things that we need to watch. Contractures. We still brace. We just take it a day at a time. And at the end of the day, we make sure our days are good.
I remember when we received the diagnosis of SMA, I had the fear of not ever potty training my child. And now he’s 110% potty trained. And I tell people, I said, “This is really crazy, but like, I bought every pack of underwear because they were so cute on him.” And so that’s, that’s a huge accomplishment for us. When I see Eli accomplishing things, learning new ways to do things on a daily basis, to be honest with you, it blows my mind. It really does. He has a strive for life that I have never ever seen in a child. He loves life.
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