Rubén (Roo) is one year old. He lives in the UK and is diagnosed with myotubular myopathy. Earlier this year his mum Siân held a hugely successful fundraising event for Myotubular Trust, attended by more than 230 guests who came out to celebrate Rubén.
Siân says ‘We wanted to do something to give back to the Myotubular Trust for all of their much needed support since Rubén’s diagnosis. We wanted to do something where we could get all of our friends and support together under one roof and celebrate them too and that is what we did.
We had over 230 people pass through the doors and hand over their pennies and pounds for multiple chances at winning amazing prizes, auctions and more and boy did they spend. Everyone had the most amazing night and there was a sore head or ten dozen come the morning. We all enjoyed it so much, I think we will make it a regular occurrence. Money well spent, for such a special charity.’
If you would like to learn more about how to fundraise for Myotubular Trust or about how they spend the money that is raised in their name, visit the Myotubular Trust website.