Emily shares why community events mean so much to our families. From feeling accepted and understood to enjoying a day out away from the everyday challenges and creating new friendships, only a few hours can have such a big impact. Your donations to our Big Give Christmas Challenge allow us to continue to support families like Emily's and offer these important events throughout 2026.
Our daughter Arabella is nearly four. She was diagnosed with MPS I Hurler when she was one year old and underwent a complicated bone marrow transplant in the summer of 2023.
The day-to-day stress of living with a rare condition like MPS is hard to describe and it can be lonely for all of us.
We are always living a balance between explaining Arabella’s condition, our daily worries and challenges and trying to fit in, be normal.
We have been lucky enough to be able to attend several MPS Society events.
These days out surrounded by people who just understand, feel like a big supportive hug.
We are so grateful to the MPS Society for arranging such brilliant opportunities that allow us to enjoy and spend time with other families like ours.
In April we joined the family day at Fairytale Farm. It was a lovely place with so much to do, there were dinosaurs, real animals, lots of slides and a cute little rabbit kitchen. The MPS Society also organised Easter crafts for the kids who all had a brilliant time.
But the truly invaluable part is spending time with families like ours who are navigating this life of hospitals and medications, of uncertainty and complexity.
At the event we met Marisa, Max and their family. Arabella and Marisa hit it off straight away and the three of them have become great friends since. It's so important for the children to grow up knowing they have someone who can relate to the hospital visits and all the other impacts of their conditions. For us as parents it is vital too to have someone we can share our experiences with. The day was also a great opportunity to catch up face to face with Sally, who is our wonderful, dedicated MPS Society support team member.
We are so looking forward to the next MPS Society day out to meet up with friends and to make new ones.
How you can help
We are thrilled to be taking part in The Big Give Christmas Challenge once again this year with the potential to raise a whopping £25k for the MPS Society! These funds will go towards funding our amazing family events over 2026.
