A SPECIAL team of carers ensure a three-year-old girl with an incurable condition can live a normal life.
Emily Rigg, of Crockerton, near Warminster, has a tube connected to her throat, which keeps her alive.
She suffers from congenital central hypoventilation syndrome (CCHS), a condition that affects only 400 people worldwide. She has no ability to breathe, so without assistance from a ventilator she would die.
CCHS normally affects people during sleep, but in Emily's case she needs round-the-clock care. She spent the first year of her life in Bristol Children's Hospital, but her parents Debi and Phil were determined to take her home.
They were specially trained to cope with any eventuality and Emily was the first child to be allowed to return home through the Lifetime Service's home care team, which is part of the Bath and North East Somerset Primary Health Care Trust.
This is a group of nurses who are taught how to meet the needs of the children they look after. Currently, they care for 24 children in the area who have other ventilation problems and have just won a national award for their achievements.
Mrs Rigg admits Emily's prognosis was never good, but her daughter was determined to fight the condition and lead a normal life.
She attends a playschool in Horningsham and loves the Tweenies and Harry Potter.
However, every time Emily steps out of the house, two people accompany her. One person is needed just to carry her medical equipment, which includes two ventilators, spare batteries and oxygen cylinders.
Although CCHS is incurable, some children start to breathe for themselves when they reach puberty. Technological advances have meant that Emily has a much longer life expectancy and new equipment has helped her quality of care.
Mrs Rigg said: "People may wonder why all these resources are spent on one child, but she is a living human who is here to stay.
"She is never left on her own without a carer and a great team supports us.
"It's not just the home care team, other professionals make our lives easier. Dr Mark Thorpe, from Smallbrook Surgery, in Warminster, has been a great help and Peter Fleming and his team at Bristol Children's Hospital give specialist advice any time day or night."
Emily's eight-year-old sister Becky can sometimes feel left out because of all the attention her sister gets, but their bond is getting stronger.
Mrs Smith said: "As far as Emily is concerned, her carers are also part of the family. It would be impossible without them and we have a lot to thank them for."
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