Jonathan’s Story

Meet Jonathan

When I was diagnosed with spinal muscular atrophy (SMA) as a kid, my whole world changed. My family and I had to figure out a lot of new things, like getting a wheelchair, making our home accessible, and learning how to take care of my health. It was a lot to handle, and at times, it felt really hard and sad. I often felt anxious and sad, but my parents were always there for me. They worked hard to make sure that my life was as normal and fun as possible, even though everything felt different.

School was tough for me. It wasn’t just the physical challenges of using a wheelchair, but also feeling like I didn’t fit in with the other kids. I loved my friends—they did their best to include me in everything. But it was still hard to watch them do things I couldn’t, like play sports. Instead of focusing on what I couldn’t do, I decided to focus on what I could do. I loved learning! I found joy in reading books and exploring computers. That’s when I discovered coding and robotics, and it inspired me to work towards a career in tech.

My family has always been my biggest support. We found happiness in the simple things, like having family game nights, watching movies together, or just laughing at silly jokes. My sister has been especially important in my life. She always knows how to make me laugh and never treats me any differently because of my condition. She’s my best friend and my biggest cheerleader.

Living with SMA has taught me a lot. It’s shown me how strong I am, and how important it is to have people who love and support you. I’ve also learned how important it is to take care of my mental health. It’s okay to feel sad or frustrated sometimes, but it’s also important to talk to someone about it—whether that’s a family member, a friend, or a counselor. Taking care of your mind is just as important as taking care of your body. When I started paying more attention to how I was feeling emotionally, I felt stronger and better able to face challenges.

I hope that by sharing my story, I can offer some hope to anyone who’s going through something similar. No matter what challenges you face, you’re not alone. There are so many amazing things you can do, and people out there who care about you. So, keep pushing forward, find the things that make you happy, and remember to lean on the people who love you the most.