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Teen to aid charity
7:00pm Wednesday 11th April 2012 in Chippenham
A teenager suffering with the debilitating condition ME is to help organise a fun day in July to raise awareness of the illness.
Marie Edes, 15, of Kington St Michael, had a bad chest infection in March last year, and was diagnosed with severe disabling chronic fatigue syndrome in July.
She was unable to continue with her studies at Abbeyfield School in Chippenham, and can only cope with about 15 minutes of learning with a private tutor at home each week before becoming exhausted.
Mum Jane said it has been difficult for the family to come to terms with Marie’s illness, which has transformed her into an exhausted invalid.
“She has good days and bad days, and in the good times, you’d think she was just like any other teenager,” she said.
“But those times only last for a little while, and then she begins to look physically ill, her appearance just changes. She gets red patches under her eyes and goes pale. It is distressing for us all.”
It is hoped that Marie, who has a twin sister, Jemma, and a nine-year-old brother, Jamie, will recover as she gets older.
“As she is so young, she should hopefully end up growing out of it, but that doesn’t always happen,” said Ms Edes, who works part-time in order to support her daughter with help from her retired parents.
“It is quite a complex thing, and it is not very well understood. It’s hard for us all, and I feel for Jemma too, as they are close and, after growing up together, Jemma now has to go to school by herself.
“It is fortunate in a way that the girls are twins, as it keeps Marie connected with her peer group, and she likes to see friends when she is able to.”
Marie will be unable to take her GCSEs with the others in her year because of her illness, but is predicted A to C grades.
She has started to write poetry to express her feelings. In one, she said: “Can somebody hear me, is anybody there / Please help me get rid of this despair.”
She also speaks of her “never-ending gloom”.
“We want to raise awareness of the condition,” said Ms Edes. “Marie suggested the fun day, which is positive, even if she is not able to do much else to help.”
A venue is still being sought for the fun day, which will be held in the village on July 21 in aid of Invest In ME and Let’s Do It For ME.
Updates will be available in the Gazette when a venue is found.