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Cri Du Chat Syndrome Family’s Heating Bill Minefield

January 6, 2012

A couple from Barrowford, who need to keep their heating on 24-hours a day because of their son’s disability, have said trying to get help to pay their heating bills is “a minefield”.

Vicki and Heath McDonald-Noble’s four-year-old son Nathaniel has a condition that means he struggles to control his body temperature.

They said because they both work, they do not qualify for some benefits.

Pendle Borough Council said it would look at ways to help the family.

Nathaniel has Cri du Chat syndrome, a rare genetic disorder caused by a missing chromosome, which means he is severely mentally and physically disabled.

Mr McDonald-Noble said: “We have to keep the house really warm for him and winter is an especially difficult time.

‘Heating and eating’

“He gets cold and can turn blue quite easily, just coming out of the bath, and things like that.”

Mrs McDonald-Noble has reduced her hours at work to care for Nathaniel, and even though he receives Disability Living Allowance (DLA), the family said they were worse off financially since he was born.

Mr McDonald-Noble said they did not qualify for a lot of the assistance that is available – including from energy companies – as you have to be on means-tested benefits, which doesn’t include DLA.

He said: “Since Nathaniel was born our heating bills have doubled. There is help available, but just getting to what’s available is really difficult.

“The whole system is a minefield with no clarity on what is or isn’t available.”

Matthew Pearson, the home improvement manager at Pendle Borough Council, said the family was being processed for a disabled facilities grant, and that the council would also look to include heating measures within the application.

He said: “Each person is assessed individually. It’s not a quick process, but we will process everything as quickly as we can.”

Graham Whitham, from Save the Children, said: “A lot of the parents that we speak to are telling us they’re having to choose between heating and eating.

“Family finances are under real pressure at the moment.”

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