Thank you so much for smashing our target of £24,000 for the Big Give Christmas Challenge! Your generous support means we are able to organise events such as the Drayton Manor fun day that brought so much joy to Phoebe, Maddi and Tillie Mae who all attended.
Read below what the trip meant to them and their families and maybe consider making a donation, so that we can continue to plan activities and get-togethers that are accessible and suitable for our whole community.
Phoebe
Our trip to Drayton Manor was a real eye opener into the world of MPS. Phoebe was only diagnosed in March this year, and everything was still so new to us.
Getting the chance to meet other families and children going through what we are, was perfect timing and exactly what we needed. We met many families at the evening event and Tillie Mae's family were especially welcoming. Each family we met, had a different story of receiving a diagnosis and knowing I could message them for advice or just a chat at any point going forward, made us feel like a part of a growing MPS family.
Meeting at a theme park was a great idea, my other daughter enjoyed the day being a normal child while Phoebe could spend time with others just like her. With a diagnosis of MPS, we really struggle to find places to go to that accommodate both children.
The evening entertainment was a huge hit with my eldest daughter and the food was delicious. The hotel was very accommodating to Phoebe's needs and the timings of the events fitted in well with her routines. We would definitely go again to something like this, I hope the MPS Society plan more exciting trips away.
Knowing I could message them for advice or just a chat at any point going forward, made us feel like a part of a growing MPS family.
Maddi
When Maddi was diagnosed with MPS III Sanfilippo eight years ago, the paediatrician said for us to contact the MPS Society as they are the advocates for Mucopolysaccharidosis. At the time, we never knew how invaluable they would be to our lives.
They have helped to get Maddison into an SEN school, filled out numerous forms with us and supported with the adaptions needed for Maddison.
They have also helped us to connect with other families who face the same difficulties and heartache of MPS III.
This summer, we went to Drayton Manor to have some fun. We stayed at the Drayton Manor Hotel, had dinner and enjoyed the kids' entertainment. We had such a good time in the theme park as VIPs too, all thanks to the MPS Society. We had an amazing time catching up with families and making some new friends too! In the words of Maddi: "BEST DAY!".
They have also helped us to connect with other families who face the same difficulties and heartache of MPS III.
Tillie Mae
We are part of a wonderful charity, called the MPS Society. They organise family days and breaks for people who live with an MPS condition. We have been to many of their events over the years. It’s a time when we can all relax, knowing that almost every single person in the room is going through the same or similar.
Some are just starting their journey, attending for the first time, and others come along regularly. It’s also a good time for siblings to mix with other siblings who understand. It's an opportunity for them to go and enjoy the fun things that are sometimes hard to do as a family when you usually have to put your MPS child first, especially once the disease progresses.
Parents can just have a chat or laugh together and not feel judged in any way.
Most importantly, children like Tillie Mae can spend time with others going through the same. They may not be able to speak to each other, but they have a special bond that needs no words. We can all make memories together, as someday, that is all we will have. However, the friendships with all the amazing families we met along the way will always continue. A big thank you to the MPS Society!
Parents can just have a chat or laugh together and not feel judged in any way.
