Hello, everyone! I am Emma, mum to my wonderful daughter Isabella. Isabella has MPS I Hurler and we have been members of the MPS Society since 2016. Even though we were aware of many community events organised by the charity throughout the year, we only attended our first event this summer - a family fun day at Drayton Manor Resort theme park.
To begin with, we were unsure how it would be to spend time with so many people we did not know. However, we were quickly made to feel part of a community.
Even more so, when we met a family we knew from Manchester Children’s Hospital who were also on the trip. It was lovely to catch up with them and be able to have a proper conversation instead of fleeting chats in between appointments in a corridor. We also had a great conversation with another family who were really helpful and gave us lots of ideas on disability access support.
To us, going on the trip and meeting other families in similar circumstances made a real difference. It helped us to open up more and to talk to people about Isabella’s future.
We also felt that there was more understanding, consideration, and care as compared to other events. Instead of our daughter pushing herself to join in with friends and forcing herself to do things that we know cause her pain to her back and make her tired, Isabella was able to relax, too.
Being around children with similar conditions, she could see others getting exhausted and needing to stop which helped her to accept it, too.
This may have been our first event, but it will not be our last!
We were so nervous about attending a trip, as in some ways it is hard to accept our reality and see other children.
However, to see the joy in Isabella’s face and for her to be around children who find life just as difficult as she does, helped her in so many ways. It definitely made it all worth it.
This Christmas help to create a community for people living with MPS, Fabry and related conditions. We want to raise £24,000 to fund bespoke events so families like Emma's can find support, understanding and strength among people in similar circumstances.
All you need to do is make a donation between 12 midday on Tuesday 28 November and 12 midday on Tuesday 5 December. During this time donations will be matched pound-for-pound at no extra cost to you meaning your donation will be worth twice as much to us and the people we support.
Just visit www.mpssociety.org.uk/biggive between those dates to donate online.