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Little fighter Ava battles illness to be home for Christmas

By The Citizen  |  Posted: December 27, 2012

together:  Claire Sullivan, with daughters Ava, 20 months, and Leah-Louise, seven.

together: Claire Sullivan, with daughters Ava, 20 months, and Leah-Louise, seven.

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LITTLE Ava Parsons defied doctors' predictions to be here this Christmas.

The 20-month-old has fought back from the brink of death at least 15 times in her short life.

She was born in April 2011 with a severe brain abnormality which makes it extremely difficult for her to breathe and eat.

Ava is frequently rushed to hospital to be treated using an oxygen head box or continuous positive airway pressure.

Mum Claire Sullivan, of Innsworth Lane, said: "She's been so close and doctors have said they didn't think she would pull through.

"I didn't think she would still be here.

"Me and her dad made the decision we didn't ever want her to go on a ventilator because if she did she would probably never come off it and we would have to turn it off anyway.

"But each time, thank God, she's pulled herself through it.

"I ask myself all the time how she does it.

"I believe it's because she's a fighter. She's a red head and very feisty."

Claire says her youngest daughter has been in hospital about 50 times so far and she spent last Christmas thinking she would lose her.

But she said Ava seems to finally be improving. All the family were there for Christmas, including dad Lee Parsons and sister Leah-Louise, seven.

Claire, 27, has bought sensory lights and a big bean bag for Ava, who is deaf, almost totally blind and has tightening in her muscles which makes it difficult for her to sit up.

Claire said she tries not to think about whether this will be Ava's last Christmas with them.

But she firmly believes they never would have made it this far if it wasn't for the trust.

Respite nurse Sarah cares for Ava six hours a week.

And the toddler also goes to creche at the charity's Gloucester base once a week.

Claire said: "Without them I would be lost.

"There's no way I would have got through.

"They have been there since the beginning."

The trust is running a campaign to raise £500,000 to expand its overnight provision. It has raised £70,000 since the campaign was launched in August, backed by The Citizen.

The fundraising drive will continue in the New Year.

The charity has supported hundreds of families since it was founded in 1989 by Vance and Heather Hopkins after the death of their son James, aged 20 months.

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