Benefit payments over Newport girl's rare heart condition 'flawed'
The way benefit payments are assessed for thousands of children with a rare heart condition are fundamentally flawed, claims a children's charity.
Little Hearts Matter said it was concerned about the case of a nine-year-old girl from Newport, who has hypoplastic left heart syndrome.
It claims the UK government is incorrectly withdrawing benefits from children with the illness.
The UK government says decisions are based on medical evidence.
Morgan Edwards, from Newport, has the rare condition.
Children born with the illness have half a heart, which means they tire easily and need heart and lung transplants when they are as young as 11 years old.
In addition to this, Morgan has protein losing enteropathy, which means she loses protein through her stomach lining.
End Quote Kay Edwards Morgan's mother
I think it's wrong that they've actually, point blank, said no to her. It's pretty disgusting if you ask me”
This has to be compensated for with protein supplements and lots of fresh meat and fish.
Her family was receiving nearly £500 a month in disability living allowance, but this has been reduced to £80.
Her mother, Kay Edwards, said they were now going into debt to pay for Morgan's care, which includes regular trips to Birmingham Children's Hospital.
Ms Edwards was also receiving a carers' allowance - worth £200 - because she says she is unable to hold down a job due to Morgan's condition. This benefit payment has been stopped completely.
She said: "If we didn't give her her high protein diet, if we didn't buy her the things that she needs, her health would suffer from it, so I think she deserves the DLA (disability support allowance).'Disgusting'
"I think it's wrong that they've actually, point blank, said no to her. It's pretty disgusting if you ask me.
"It's not easy on Morgan, I think, more than anything. It's just really hard, and I don't want to plead poverty. I think she deserves the money to make her life easier."
Little Hearts Matter said the system was inflexible, and it was leading to wrong decisions all over the UK.
The Department of Work and Pensions (DWP) said Disability Living Allowance was paid to help people who are unable to walk or virtually unable to walk or do things like wash and dress themselves.
"The benefit is awarded based on what a person tells us about their needs and any medical evidence we are given," said a spokesman.
"If a person's needs change or they become more independent as they get older then they may not get the benefit anymore, or they might get it at a different rate.
"People also have the right to appeal if they don't agree with a decision or want to provide additional medical evidence."
Morgan's doctor has written to the DWP explaining the debilitating nature of her illness, but the government department has not changed its position.
Mrs Edwards has appealed the decision, but this was rejected so she is now waiting to go to a tribunal.
Suzie Hutchinson, chief executive of Little Hearts Matter, said: "Children born with single ventricular heart disease don't have a normal life.
"They only have half the energy levels of other children of their age. They have problems climbing the stairs, they have problems walking outside, they haven't got the energy even to eat big meals, they need lots of little meals. They need a lot of added care, and they need help with mobility as they're getting older.
"So, yes, children with single ventricular heart disease should be getting disability living allowance."