Help Me Keep My Independence

Hi, my name is Shaya. I’m 16 years old, I live in the UK, and I have Spinal Muscular Atrophy Type 2 (SMA Type 2), a rare muscle wasting condition. I’ve never been able to walk and have relied on a powered wheelchair since I was four years old.

For almost ten years, my wheelchair has given me something priceless: my independence. It gave me the freedom to go to school, spend time with my friends, travel with my family and experience the world around me. It wasn’t just a way of getting from one place to another.

It gave me my childhood.

Now it’s reaching the end of its life. It regularly develops faults, no longer supports my posture properly and struggles with everyday obstacles like kerbs, rough paths and uneven ground. Recently, it even broke down while I was travelling and left me stranded miles from home.

The hardest part isn’t the wheelchair itself, it’s everything I miss because of it. Sometimes all that’s stopping me from seeing my friends is a single step at the front door. I have to think twice before making plans because I don’t know whether I’ll actually be able to get there. I’ve always loved the beach, but I’ve never been able to reach the shoreline because my wheelchair can’t get across the sand. These might sound like small things, but they’re the moments that make up everyday life.

I’m 16 now, and my future is something I think about a lot. Most people my age are looking forward to university, travelling, making spontaneous plans with friends and becoming more independent. I want that too. Instead, I’m worried that while everyone else is gaining more freedom, I’ll slowly lose mine. Not because of my SMA, but because my wheelchair can no longer keep up with my life.

That’s why I’m fundraising for an iBOT. The iBOT isn’t just another wheelchair, it would help me keep the independence I already have while opening doors that have always been closed to me. Its four-wheel-drive mode can climb kerbs of up to 7 inches, allowing me to access shops, cafés, restaurants and friends’ houses that are currently out of reach. It can also travel across gravel, grass and sand, meaning I could finally reach the shoreline instead of admiring the ocean from a distance. One of the features that would change my life the most is its ability to climb stairs. For me, stairs have often meant missing out, whether that’s visiting a friend, exploring somewhere new or simply having to use a different entrance while everyone else walks straight in.

As I start thinking about university and adulthood, I don’t want my world to become smaller. I want to be able to say “yes” when my friends ask me to go somewhere instead of wondering whether my wheelchair will stop me from getting there. I want to travel more independently, visit places I’ve never been able to access and build a future where a kerb, a staircase or a patch of grass doesn’t decide where I can and can’t go.

For most people, growing up means gaining more freedom. I’m simply asking for the chance not to lose mine.

Unfortunately, that freedom comes at a huge cost. An iBOT costs just over £56,000, and it isn’t funded by the NHS. On top of that, there are ongoing servicing and maintenance costs that I’ll need to cover myself.

Every donation, no matter how small, brings me one step closer to keeping my independence. If I’m unable to raise the full amount, every penny will still go towards purchasing a more basic powered wheelchair that better meets my needs, with any remaining funds helping to cover its ongoing maintenance.

If you’re unable to donate, simply sharing my story would mean the world to me. Every share gives someone else the chance to help.

Thank you so much for taking the time to read my story. Your kindness could help me keep the independence my first wheelchair gave me as a child and carry it with me into adulthood.

Thank you

Shaya