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Campaign to raise awareness of chromosome disorder
PARENTS of a girl with an extremely rare chromosome disorder have started a campaign to raise awareness of her condition.
Doctors have told Stuart and Claire Todd that their daughter, nine-year-old Abbey, suffers from having a duplicated X chromosome and the condition is so unusual there are only 50 known cases in the world.
Abbey, who goes to Evergreen Primary School in Bishop Auckland, has a mental age of three and suffers speech and problems.
She is unable to dress herself and cannot read or write.
Her parents, of Lincoln Road, Moorside, Consett, County Durham, expect she will not develop beyond the mental age of 12 and is unlikely to be able to live unaided.
Her mother, Claire, an administrative clerk at Shotley Bridge Hospital, said: “It has been difficult as we both work full time and have an older daughter.
“We have struggled as a family to come to terms with it, but we have not got a choice. You have just got to get on with it.”
Abbey was diagnosed because her parents pushed doctors for answers to her behaviour after refusing to accept it was autism, despite her displaying similar behavioural traits to the condition.
They were told it was a chromosome disorder following blood tests on her DNA at the genetics department of the Centre for Life in Newcastle.
Her father, Stuart, a telecoms engineer, said: “If it was not for the fact that we pushed and pushed then we would not know what was wrong with her and would not have been able to prepare ourselves properly.”
On Saturday, the family held a coffee morning at Castleside Village Hall, near Consett, for the rare chromosome disorder charity, Unique - which has given the family support - and raised £1,264.
A further £500 is being donated by the accountants Ernst and Young and the Todds have pledged to keep raising money to raise awareness of the condition.
They are planning an evening of live music in the New Year and would like to hear from anyone who can help with acts, donations for a raffle or a venue for the event.
Mrs Todd can be contacted by calling 0779-162-6844 or emailing firstname.lastname@example.org
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