A group of mums in Reception - Emma, Denise and Michelle - came up with the wonderful idea of the iMAP Your Finances Triathalon at Hurst for www.MyasthenicKids.org in order to raise money for what will be the third annual MGA Children's Weekend for families of children with Myasthenia.
Myasthenia is a weird and wonderful neuromuscular disease - weird in that it is incredibly rare and complex, and wonderful in that our kids are all very special people. Perhaps the most important part of the annual Children's Weekend therefore is that it enables the children to meet other children like themselves. It also enables the parents to learn from each other about how best to care for and support children with a complex neuromuscular condition that is on the frontline of research.
We hold workshops about physio and occupational therapy, school needs and benefits advice. And we invite the research teams at Newcastle, Oxford and Great Ormond Street to come and tell us about the latest breakthroughs.
The weekend is a positive and joyous event where everyone is equal with a common goal - getting the best out of life for children with Myasthenia. This disease can affect people from all walks of life from all four corners of the UK therefore, to ensure equality we rundraise to provide accommodation, food and, where needed, travel grants.
The video on this page was taken recently and shows 4yr old Toby Jones climbing up the stairs. It is a good example of how difficult life can be for our children. And also just how determined they are!
If you want to learn more about Myasthenia our MyasthenicKids website is here www.MyasthenicKids.org and a write up on last year's Children's Weekend can be found here: http://db.tt/CFol4MD
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