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Search forRare disorder means friendly Phoebe, 4, is trapped in a soundless world of her own
Thursday, November 20, 2008, 12:15
Her mum Karen was convinced something was wrong with her first child who was unable to walk or talk and always seemed to be in "her own little world".
The little blonde girl, who loves spending time with other people, was diagnosed with Rett Syndrome when she was three years old. She also suffers from osteoporosis.
Karen, who lives in St Austell, said: "Phoebe is just like a baby. She can't walk and it is unlikely she will ever learn how to talk."
Now a group from St John's Methodist Church in St Austell have organised a Christmas singalong to support Phoebe and her family.
They hope to raise enough money to buy sensory equipment to encourage Phoebe to communicate using signs and symbols.
Her teacher at Doubletrees School, in St Blazey, Vicky Rowland said: "It is important that she gets used to using switch adapted equipment that gives her access to communicate.
"She is already being taught to use symbols and sign language to communicate and she likes looking at symbols, and that is how she makes choices."
The condition is a complicated neurological disorder which mainly affects girls, leaving them with profound and multiple disabilities and highly dependant.
If they reach adulthood it is unlikely that people with Rett Syndrome will learn how to speak and only half will learn how to walk.
One in every 10,000 girls is born with the disorder but it only becomes evident when they are around two years old.
Children may progress a little but when they reach the age of around 13 they will either start to regress or stop developing.
Karen, who has a son, Jake, who is also four, said: "Phoebe really enjoys going to the shops and putting on shoes and going into the bakers because of all of the smells. She's very visual too.
"She is really friendly and loves eating, especially fruit, crackers and chocolate.
"Because it is unlikely she will ever talk we hope, with the money raised, we will buy her lots of sensory equipment to help her communicate."
The singalong is taking place on Tuesday, December 9, at St John's Church on Bodmin Road from 7.30pm.
Teacher Nicky Rowland at Doubletrees School with Phoebe, who has been chosen as the recipient of money to be raised at the annual Christmas singalong in St Austell. Picture: Jonathan Jacobs
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