Tyler's story | The Big Give Christmas Challenge 2026

Coming to terms with how rare MPS II Hunter really is, Tyler had always longed for the chance to meet others who are just like him. When he attended the Independent Adult Get Together for the first time, he found exactly that and so much more. It opened the door to new friendships, a shared understanding and support that extends far beyond the event itself.

Tyler’s story shows the difference community events like these can make to people living a rare life. By donating to the Big Give Christmas Challenge, you can help make sure this invaluable support continues in 2027.

Tyler's story

"Hi, my name is Tyler and I have MPS II Hunter. Growing up with the condition felt quite normal to me because it has always been a part of my life. This is not to say that living with it hasn’t been difficult. I had hip disease and couldn’t keep up, so I always had to push myself not to be left behind. I also struggle with hearing loss, and my heart condition means I get out of breath much quicker than others my age.

Sometimes there are days when I ask myself, ‘Why me?’ but that is all part of my journey.

Thankfully, I have never been bullied at school, instead people seemed interested to learn more about my condition. There have been occasions when I've been told that I’m lucky. While I understand what they mean, I feel it downplays the challenges I have faced and still live with.

Because MPS II Hunter is so rare, I have always longed to meet people like me.

Back in 2017, I attended the MPS Society community conference. I was much younger then, so for me it was just exciting to be around people, rather than trying to understand their conditions or asking questions about them.

Then three years ago, I joined the Independent Adult Get Together for the first time and was amazed to see so many people with an MPS condition.

This was the first time I had truly met others like me.

Admittedly, I was a little nervous but quickly realised that we all shared similar experiences and were able to support each other. Everyone made me feel welcome and accepted.

Over the years, I have made many friends through the event. Now I always look forward to catching up with them and see it as a chance to make new friends, like Eleanor. Eleanor and I speak nearly every day. Despite living with MPS IV Morquio and facing her own challenges, she is such a happy-go-lucky person which inspires me.

We don’t just talk about our condition but are there for each other like any friends would be.

Currently, we are making plans to meet in person and I’m already excited about celebrating Eleanor’s birthday together next year.

Being around people who understand makes such a big difference.

I feel much more confident and can even laugh about things like having 'grandad hips'. Because we all try to stay in touch between events, the friendships I have developed have become stronger, helping me feel more connected to others who share similar experiences.

I would have never met any of them if it wasn’t for the MPS Society organising this event.

As soon as the next Independent Adult Get Together is announced, I’ll definitely join again, but since this might be some time away, we’ve made plans to meet up before then and I cannot wait!"