NICOLE: In July 2019, Brady was 13 months old and was diagnosed with SMA Type 2.
NICOLE: Our doctor was very sympathetic. She said, “Nicole, I’m so sorry, but I have to tell you this, but we have a plan.”
TYLER: They assured us that there's been some advancements, so that was a definite relief––still something no parent wants to hear ever, but there was some hope.
NICOLE: When we met with our genetic specialist and the pediatric neurologist, she actually had a slide show prepared for us. Through that slide show, she showed us what was missing. She went through all the types of SMA. She went through the different types of treatment. She said there are 2 FDA- approved treatments, and we chose ZOLGENSMA.
TYLER: We chose ZOLGENSMA because it was a one-time treatment and it treats the genetic root cause. The virus takes the new genes to the motor neuron to provide the missing proteins.
NICOLE: We went to the ZOLGENSMA webpage. We found videos of families just saying, “We went through the clinical trials. We did this….“ And we watched those videos so many times. We were confident in ZOLGENSMA because of the clinical trials. From the day we received diagnosis, our journey went really fast and our doctor was prepared.
NICOLE: The OneGene Program™ called us after our doctor submitted the consent form. It was amazing to have them reach out so quickly because we felt like we had someone in our corner. Our Patient Resource Manager reached out to us right around the time OneGene did. She walked us through each step of the journey. She would call me and she would console me as a mother. She would say, “You’ve got this. We've got this. This is what comes next. This is what is the next step.”
NICOLE: Before Brady received ZOLGENSMA, we had to go through some tests to make sure that he qualified. We first did the antibody test then baseline tests. We began the corticosteroid with Brady the day before infusion and continued that afterwards. On treatment day, we were nervous on the way there, but our PRM was there waiting for us, and then that fear quickly went to excitement when we got to the hospital. I'll always remember the day that Brady received ZOLGENSMA.
TYLER: Brady received treatment in August 2019 when he was 14 months old.
NICOLE: When the infusion was over, I felt like I could breathe for the first time. We cheered. Our pediatric neurologist cheered. It was almost like a party. We had Brady his first party––his first ZOLGENSMA party. After treatment, Brady's liver enzymes were elevated. Our doctor had already been monitoring those, but once she received that back, she started monitoring those a little closer.
TYLER: At the time of treatment with ZOLGENSMA, Brady had lost ability in his legs. He was struggling to crawl. He was struggling to hold his sippy cups, hold his toys. He had lost a lot of mobility.
NICOLE: Today, Brady can climb the stairs. He can get in his walker independently. He can walk across the yard with his walker. Brady eats on his own. He uses utensils and finger foods and he eats everything by mouth.
MASON: Me and Brady like to play catch and ride horses, go fishing together. I help Brady by getting him on the four-wheeler, helping him get up the stairs, and helping him cast his fishing pole.
TYLER: He is a wild child. He never stops, he never slows down from the time he gets up until the time he goes to bed. He is going 100 miles an hour, never stops talking. He amazes me every day with the new things that he's doing.
NICOLE: Brady hasn't needed breathing therapy. We currently do physical therapy and hippotherapy. ZOLGENSMA has exceeded our expectations. We wanted to stop progression of the disease, and we are not only seeing that, we're seeing Brady continue to get stronger.
NICOLE: Like any parent, my hope for Brady's future is that he continues to grow. SMA hasn't changed that hope. I have the same hope for Brady as I do Mason. I want him to continue to be a good person, I want him to continue to be healthy and I want him to continue to grow.
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