LAURA: We have 2 kids. We have a daughter named Elizabeth and then we have our son, Donovan. Donovan was born with SMA Type 1. When he was born he had normal scores. He had normal delivery. When we went to his four-week checkup, he wasn’t responding normally. And the pediatrician said that he was very floppy, that something wasn’t right. At diagnosis, we were told that Donovan would continue to lose any strength that he did have, to move, and then he would also lose his ability to swallow and, eventually, to breathe. We met a doctor who had been working on the clinical stages of a treatment for SMA.
MATT: And she’s like, you need to know that there’s a trial going on.
LAURA: We were told that it’s a single dose through an IV. We thought, how can we not try? How can we not give him a chance? On the treatment day, we were excited, we were hopeful. We were so happy that today we are making a difference.
MATT: I will always remember the day that Donovan was treated.
LAURA: After treatment I saw little changes.
MATT: I remember he was laying there on the changing table and he, he couldn’t move at this point. And he takes his arm and he goes like this and he like moves his forearm and his wrist up just a little bit. And that was the first time that we saw like the tide had turned against SMA a little bit.
LAURA: Donovan is 2 and a half years old and he can roll. Donovan can sit up independently. He can hold his head up. We’re actually able to see this treatment working as he is growing and getting to be himself at home, with our family, spending time together. He does have symptoms of SMA. But he’s also growing stronger every day. And he is a very happy kid.
DONOVAN: I am Donovan and I’m 4 years old. I’m so excited to start school. When I grow up, I want to be a scientist.
LAURA: Donovan’s doing great. He’s a smart kid. Donovan has a really full life.
MATT: Since treatment, his abilities have grown a lot more than, than we had expected. We didn’t really know what to expect. He’s talking. He doesn’t stop talking. Which is a, another kind of major thing. Not everyone with SMA Type 1 is verbal.
LAURA: He has really good fine motor control. He can manipulate toys. And he can feed himself. He can talk. He is learning to read. And he can sit up by himself all day long. He can push his manual wheelchair. Donovan can do most activities that 4-year-olds can do. Even though Donovan’s received treatment, SMA does still affect him today.
MATT: I think that there’s a, a big draw to only talk about the positive. Especially when you’re, you’re so grateful for what he’s gotten. But it hasn’t erased the disease.
LAURA: We go to an SMA clinic and we will see a neurologist. We see a pulmonologist. We see a dietitian. And we see an occupational therapist at clinic that helps us with equipment. He also sees a physical therapist regularly. Getting treatment for SMA is kind of like step one. And then your whole life is ahead of you. So, you want to make sure that your child has everything that they need to grow and thrive.
MATT: It’s cool that we get to think about later in life. Which is not something you think about with SMA Type 1 because until recently, there was no treatment for it. But we get the chance to do that now. Having ZOLGENSMA has completely changed the trajectory of his life.
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