Evie Merrett has turned a fun day out into a fund raiser for a charity that has helped her with a much misunderstood condition.
Evie, nine, will be fund raising for Tourettes Action when she takes to the mud and obstacles of an Insane Terrain course with her mum Joey tomorrow.
Tourettes is most often associated with people who shout swear words or other inappropriate things, a ‘tic’ known as coprolalia, but 90 per cent of Tourettes sufferers do not do it.
Joey, of Folly Road, Mildenhall, points out: “There are a lot of people who have that tic but don’t have Tourettes. It’s so often connected with what looks like spasms, which is the reason a lot of childhood Tourettes goes unrecognised.”
Evie explained: “Sometimes when I’m walking my legs jolt upwards. It makes me look like I’m doing a strange dance, especially when I’m at school and supposed to be walking sensibly.
“They didn’t understand until I stood in front of the class and told them. It was all right because I could hide behind my piece of paper.”
But she has not always had that level of understanding. A dance teacher complained to Joey that the then four-year-old Evie was unacceptably ‘doing her own thing’. In several gym competitions she fell because her legs made the wrong moves. She gave up both.
Joey said: “Children get told off for doing something they can’t help. When they’re little they’re bad at explaining and say they can’t help it, so they get told ‘of course you can’.”
Tourettes Action combats that with a passport explaining the condition and the tics the holder has, which a child can show to adults, such as new teachers. It also backs them with help, including buying musical instruments because playing helps control their tics – Evie plays the violin.
Evie is looking forwards to tomorrow and said: “Mummy suggested Tourettes Action and I thought that sounds good. They haven’t got money and they’re trying to raise awareness of big tics. I’m all right but some people have to be home schooled.”