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Disabled girl faces losing her lifeline

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A SOUTH Tyneside mum claims her eight-year-old disabled daughter will be stranded if a Mobility car is taken away.

Little Amarni Gibson suffers from the rare genetic condition Williams syndrome, which means she is hooked up to a feeding machine 20 hours a day because she can’t eat food.

But the Department of Work and Pensions has told the family they can no longer have the VW Golf – because they no longer consider Amarni to be disabled enough to qualify for it.

Now the family faces having to return the car, which is funded through the national Mobility scheme and needed to ferry the youngster about, on March 7 – Amarni’s ninth birthday.

Mum Gillian, a hairdresser from Marsden, South Shields, said today it would be “almost impossible” to transport the machine, which is connected to her daughter’s tummy, on public transport.

The 35-year-old, who’s married to Barry, a bricklayer, said: “How do they expect me to carry Amarni and all of her equipment on buses?

“It’s attached to a peg in her tummy – there are wires everywhere and someone could easily catch themselves on it, which would be horrific for her – this machine is keeping her alive.

“Amarni is a very sickly child and incontinent. Just last year a group of young girls spotted she was wearing a nappy and were taking the mick out of her, while she just sat there smiling and waving and saying ‘hello’ to them. I was heartbroken.

“People can be very cruel, but at least with the car she has dignity, and I can quickly change her if I need to.”

The Oakleigh Gardens School pupil has to be regularly taken to the region’s hospitals for operations, and due to the size of the machine was given a wheelchair to use.

Her condition, caused by a chromosome abnormality, also means Amarni has been plagued with problems since her birth.

By the age of two, she had been admitted to hospital 23 times and needed five operations.

Mrs Gibson, who is also mum to Megan, four, and Ellie, 14, said: “Amarni can never play outside, like a healthy child, so once a week we will drive somewhere, with all of her equipment to places like the cinema or the park, so she can have some kind of normality.

“She often has distressing nights, where she’s been sick, so we miss the school bus and I have to drive.

“Plus, she has lots of medical appointments which I have take her to. How can I do this without a car?”

The family has now complained about the ruling, and a tribunal is due to take place next month.

Mrs Gibson added: “My husband and I are both hard-working, pay our taxes and don’t scrounge, but we can’t afford the added expense of a car on top of everything else.”

Two years ago, Amarni’s Disability Living Allowance (DLA) – awarded to pay for her caring costs – was cut from the highest level to the lowest, to compensate for the family being awarded Mobility funding.

Mrs Gibson says she has been told the DLA will not be increased to compensate for the loss of the car.

A Department for Work and Pensions spokesman said: “Disability Living Allowance is paid to help disabled people who are unable to do things like walk or wash and dress themselves.

“If someone’s needs change over time, they may not receive the benefit any more, or they may get a different rate.

“People have the right to appeal if they think a decision is wrong.”

Twitter: @ShieldsGazVez

At any time, if someone provides additional information or supporting evidence, we will look again at their claim.”

 

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