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Stourport mum's appeal to help Milli
6:40am Friday 6th December 2013 in News
A STOURPORT mother is hoping to raise awareness of a rare genetic condition that will prevent her eight-year-old daughter from having her own children.
Amelia Pearce, known as Milli, has Turner Syndrome, a chromosome abnormality that only affects females.
The St Bartholomew’s Primary School pupil is missing a chromosome, has to have growth hormone injections and has hearing problems.
Her mother Hayley Newton, 38, hopes to raise awareness and money for the Turner Syndrome Support Society by holding a Christmas fair in Areley Kings.
She said: “The chromosome that is missing is the sex chromosome, so she will never have children. If I think about it too much it can be upsetting.
“It’s a lifelong condition but it’s not life shortening. It’s rare and everyone who has it is different.
“Milli has hearing problems, she’s had five or six operations on her ears and she’s failed hearing tests since she was a baby. Her last ear operation was April and since then it’s not been too bad.
“She knows that she can’t have children - we’ve never hidden anything from her. They thought there was something wrong when I had a pregnancy scan - she’s got a webbed neck so there’s an extra but of skin from her neck to her shoulders, which is one of the main characteristics. She’ll still look young - in her 20s she’ll look like a teenager.”
Milli and her mother regularly visit doctors at Kidderminster, Worcestershire Royal and Birmingham Children’s hospitals for tests.
Girls and women affected by Turner Syndrome can have heart or kidney problems but Milli has yet to have any organ problems.
She has had operations to remove her adenoids, tonsils and an operation on her palate. She also has balance problems and only sleeps about three to four hours a night, which is a side-effect of the growth hormones.
Mrs Newton added: “Not a lot of people know about Turner Syndrome - I talk to other people on facebook who have children with it.
“Milli takes everything as it comes. She’s very sociable and she’s got a lot of friends. She likes to dance and sing and she’ll have a go at anything.
“She’s like any other child really - she just gets on with things and perseveres. She will be able to have her own home and look after herself.”
The Christmas fair in aid of the Turner Syndrome Support Society will take place at Areley Kings Village Hall on Sunday, December 8 from 1pm to 4pm.
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