Story
Thank you from the bottom of my heart for visiting this fundraising page. I am running the Royal Parks London Half Marathon in October 2026 to raise funds for the MPS Society.
I have never run a half marathon before so I will genuinely need all the support I can get. Your donations will be fuelling my legs and making sure I get over the finish line!
In December 2022 our 1-year-old daughter Ada was diagnosed with MPS1-H. This rare disease affects roughly 1 in 100,000 children. Given the rarity of the disease, it took time for all her symptoms to be put together and recognised as MPS1-H. Whilst there is no cure, there is a treatment option, and so in Spring 2023 Ada underwent a bone marrow transplant at Royal Manchester Children’s Hospital. It’s been a really difficult road to travel since diagnosis. She has battled through so much, and we will have to navigate lots of medical issues as she grows. Ada is now 4 years old, and she amazes us everyday with her strength, cheekiness and pure joy. Her laugh is the absolute best!
Along our journey we have been incredibly fortunate to meet others in the MPS community. The support from people who understand how you may be feeling and what you’re going through is so important. We’ve shared many highs and lows and have made some great friends for ourselves, for Ada, and for her sister.
The MPS society advocate for those with MPS, Fabry and related lysosomal conditions in the UK and provide support for us all in whatever way it is needed. They arrange incredible community events across the UK where we can get together. Faster diagnosis for MPS1 is key to starting treatment early and reducing damage caused by the disease so the awareness the MPS society raise is critical. They also lead conferences and are involved in research.
We know this charity will always have Ada’s back as she grows up and it will give her a community who understands. That is something very special to us and will always be worth supporting, for all children and families who need this support at whatever stage in their own journey.