Emma's story | The Big Give Christmas Challenge 2026

Emma, mum to Isabella, who has MPS I Hurler, spoke to us about the positive impact taking part in the community event at Chessington World of Adventures had on her family.

This weekend trip was a real summer highlight for our families, not only because of the fun-filled entertainment, but also because of the time spent together, the support and the shared understanding that comes from connecting with others living with a rare condition.

Your donations to the Big Give Christmas Challenge allow us to continue to support families like Emma’s and offer these important events throughout 2027.

Emma's story

“Isabella was diagnosed with MPS I Hurler at 10 months old. For our family, the past eleven years have been a rollercoaster with many ups and downs.

Throughout Isabella’s life, we have shared much of her journey online and built up a group of other MPS parents that we have connected with. When we heard about the Chessington event through the monthly newsletter, my first instinct was to see which other families were attending.

This was finally an opportunity for all the parents who have supported our family online, and whom I have supported online, to meet in person.

The whole weekend was amazing. We saw so many of the families that we had spoken to online for years and it honestly felt like we had always known them.

On the Saturday, there was a joint evening meal where all the families and members of the MPS Society Support Team came together. It was great to have some children’s entertainment too, as this meant that us parents could sit and chat about our experiences and help each other navigate whatever comes next.

It was a chance to have open and honest conversations with people who just get it.

Our middle child, Henry, was able to spend time with other children whose siblings have the same condition as his sister.

It helped him realise that other families share similar circumstances and it gave him a better understanding.

My running club often nominates the MPS Society as one of the charities that benefit from our monthly subscription, and it was brilliant to share with them what their money actually goes towards.

Without the MPS Society, we simply wouldn't have been able to bring so many families together and create such a brilliant weekend.

The whole event was just good for the heart and felt like home.

We made new friends too and we are already looking forward to the next weekend away." 

Sally and Marianne from our Events Team dedicate a lot of time and care to organising these community events, they agreed that:

"After months of planning, there was nothing better than seeing families come together, share experiences and simply enjoy being around people who understand. The atmosphere throughout the weekend was fantastic and we were especially delighted to see everyone gathered together for dinner, catching up and making new connections.”