Basildon girl believed to be only person in the world to suffer gene disorder (From Basildon Recorder)
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Basildon girl believed to be only person in the world to suffer gene disorder
DOCTORS believe a little girl from Basildon is the only person in the world to suffer from a genetic condition.
Madison Hunt, five, suffers from a range of problems, including autism, epilepsy, hyper mobile limbs and delayed brain development.
Brain scans show she has the same level of development as an eight-month-old.
Doctors at Great Ormond Street Hospital, London, believe the disabilities are caused by a problem with Madison’s 19th chromosome.
But they say there is no record of anyone else in the world with the same disorder.
Madison is helping doctors at the hospital research chromosomal disorders by undertaking tests. They hope Madison’s help will find a cure for herself and other children who develop similar problems.
It is possible that once they have defined the disorder, they could name it after the little girl.
Parents Kelly and Mark, of Laindon, said Madison is very special.
Mrs Hunt, of Cathedral Drive, said: “I realised there was something wrong with Madison when she was about two or three weeks old. She was not doing the things she should have been in terms of her movement and awareness.
“It was not until she got to 12 months that doctors realised she had hyper mobile limbs.
“This means she is double jointed and her muscles take more time to form.
“We were referred to Great Oaks Clinic, in Basildon, and eventually to Great Ormond Street, where they found she had a disorder on her 19th chromosome.
“We were shocked when doctors told us the disorder did not have a name because there is nobody in the world with the condition.”
Mr and Mrs Hunt have two other daughters, Lola, three, and Bethany, ten, who has learning difficulties and arthritis.
She added: “It is very challenging having two disabled daughters.
“I have not had a proper night’s sleep for ten years.
“I suffer from stress and my husband had to quit his job as a chef and take two cleaning jobs to support us.
“But I would not swap my girls for the world.”
Family's fundraising plan
PARENTS Kelly, 32, and Mark, 33, are looking to raise £5,000 to build a sensory room for Madison in their home.
They hope the equipment will help her brain development as well as helping her older sister Bethany.
Unfortunately, they need to raise the cash themselves as the NHS and Government does not provide funding for this.
Mrs Hunt said: “We want to set up this room with colourful lights, and different sensory objects.
“We believe it would really help both the girls.”
The couple have already held a number of fundraising events to raise the cash.
They are now looking for Echo readers to contribute their own ideas and get involved.
Anyone interested in helping the family should search for Madison’s Page on Facebook.
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