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.
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…
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