Ultimately, I feel like I’ve had a pretty normal life. Early on, I was in and out of the hospital with pneumonia, which is a common experience for people with SMA. That was probably the greatest challenge I faced as a kid. Now, as an adult, I’m not able to eat the way I once did — because of declining strength — which has been a challenge for me as well. I have to be a lot more cautious to avoid choking. But I’m grateful. I wouldn’t ask for a different life.
My mom is a fighter. When I was 7 years old, she made a connection with someone who lived in the next town over, and he helped me get on a T-ball team there. I ended up being the only kid with a disability to play on an otherwise able-bodied team. To be around other people who were pushing each other and coaches who want the best for you, that was a big deal for me.
Coming home after camp, I lived about two-and-a-half hours away from my teammates, but we would get together once a month and we would practice. I’d travel all those hours over to them. We actually won a regional tournament in our first year. So, yeah, it was interesting and funny how our team formed. I had never heard of the sport before that camp.
When I was in elementary school, I recall a time I was meant to receive an award up on stage. The thing is, they actually had no way for me to get up on stage with the other kids. And so my mom approached the school about it, and they kind of brushed her off. And my mom said: “If his classmates are going to be up on that stage receiving awards, he will be too.” And they went back and forth. My mom is resilient. She took it as far as she could, and the following year when we went back to school, they had a ramp built.
Having someone to advocate for you when you’re young is very important. So is the willingness of others to try to understand your circumstances.
These are not all the possible side effects of Evrysdi. Please refer to additional important safety information below.
Evrysdi is a prescription medicine used to treat spinal muscular atrophy (SMA) in children and adults.
Important Safety Information Before taking Evrysdi, tell your healthcare provider about all of your medical conditions, including if you: • are pregnant or plan to become pregnant, as Evrysdi may harm your unborn baby. Ask your healthcare provider for advice before taking this medicine • are a woman who can become pregnant: • Before you start your treatment with Evrysdi, your healthcare provider may test you for pregnancy • Talk to your healthcare provider about birth control methods that may be right for you. Use birth control while on treatment and for at least 1 month after stopping Evrysdi • Pregnancy Registry. Talk to your healthcare provider right away if you become pregnant while taking Evrysdi. Ask about registering with the Evrysdi Pregnancy Registry, which was created to collect information about your health and your baby’s health. Your healthcare provider can enroll you in this registry by calling 1-833-760-1098 or visiting https://www.evrysdipregnancyregistry.com. • are an adult male. Evrysdi may affect a man’s ability to have children (fertility). Ask a healthcare provider for advice before taking this medicine • are breastfeeding or plan to breastfeed. It is not known if Evrysdi passes into breast milk and may harm your baby Tell your healthcare provider about all the medicines you take • You should receive Evrysdi from the pharmacy as a liquid. If the medicine in the bottle is a powder, do not use it. Contact your pharmacist for a replacement • Avoid getting Evrysdi on your skin or in your eyes. If Evrysdi gets on your skin, wash the area with soap and water. If Evrysdi gets in your eyes, rinse your eyes with water The most common side effects of Evrysdi include: For later-onset SMA: • fever • diarrhea • rash For infantile-onset SMA: • fever • diarrhea • rash • runny nose, sneezing and sore throat (upper respiratory infection) • lung infection (lower respiratory infection) • constipation • vomiting • cough These are not all of the possible side effects of Evrysdi. For more information on the risk and benefits profile of Evrysdi, ask your healthcare provider or pharmacist.
You may report side effects to the FDA at 1-800-FDA-1088 or www.fda.gov/medwatch. You may also report side effects to Genentech at 1-888-835-2555.
Please see full Prescribing Information for additional Important Safety Information.
