‘Change the law to help sick children’ ask parents of tragic Charlie

BID FOR CHANGE ... Sarah and Chris Cookson. Below, tragic Charlie.
BID FOR CHANGE ... Sarah and Chris Cookson. Below, tragic Charlie.

A CHARITY in South Tyneside is calling on the Government for a change in the law to help sick children.

The Charlie Cookson Foundation, which supports the families of youngsters with life-limiting conditions, has launched two online petitions in a bid to make two key changes for families with disabled or ill children.

It wants carer’s allowance to continue if a child has spent more than 12 weeks in hospital, and the age at which car mobility allowances are paid to be lowered from three to two – but it needs 100,000 signatures in support of both moves.

South Shields MP Emma Lewell-Buck is backing their campaign.

Sarah Cookson, 39 – who founded the charity with her husband Chris, 36, in memory of their son Charlie, who died in 2013 aged just two – said: “Unless you have a disabled child, the chances are you won’t know the difficulties that you suddenly find yourself coming up against. We aren’t asking for the biggest changes in the world, but if the Government did listen, it would make the lives of so many families so much easier.

“200,000 signatures is a lot, but we’re hoping the people of South Tyneside will get behind us and spare just two minutes to sign them” So far the carer’s allowance petition has gained 383 signatures, and the mobility car petition has achieved 836.

Mrs Cookson, from Simonside, South Shields, saw her husband’s carer’s allowance stopped for her son after one of his many stays in hospital as he battled numerous medical conditions.

The dance teacher said: “Chris had to drop most of his hours at work as he was Charlie’s main carer. We received £54 a week in carers allowance, so we’re not talking about thousands of pounds.During one of Charlie’s hospital admissions, the Department of Work and Pensions informed him that the allowance had stopped, as Charlie had been in hospital for 12 weeks. We were really shocked.”

While the allowance is intended for the child’s care, the majority of parents use the cash to help pay for mortgages, transport, and other needs, since they’re no longer in full-term employment.

Mrs Cookson said: “The Government argues the child is being taken care of by the hospital, so the money is not needed, but the parents still need to travel to see their child. They need to keep a house going. Just to stop it is cruel.”

The charity wants two-year-olds to be eligible for mobility allowance, which means a family can benefit from a car.

Mrs Cookson, whose son was helped by garage Vic Young, said: “Trying to fit Charlie into a normal car seat was stressful. Imagine trying to manoeuvre a two-year-old, with an oxygen tank, suction equipment and feeding tubes, it’s a nightmare.

“Charlie never lived until he was three, when he would have been eligible for the mobility allowance, but because of our rented car we managed to have a few trips to Shields beach and South Marine Park, and made memories which were priceless and for which we will always be grateful.”

Mrs Lewell-Buck says she will be discussing the issue with fellow Labour MPs, and has also written to Work and Pensions secretary Iain Duncan Smith, to see if he will consider making the required changes.

She said: “I have asked whether Mr Duncan Smith will consider making changes to the way Disability Living Allowance and Carer’s Allowance work, so that parents can be better supported, and I will also be having discussions with Labour MPs to see what can be done to give those families a helping hand.

“I’m proud to have such an amazing charity looking out for the parents of seriously-ill children, and I want to congratulate the Charlie Cookson Foundation on the fantastic work they do.”

* To sign the carer’s allowance petition click HERE.

* To sign the mobility allowance petition click HERE.

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