A DESPERATE family are battling to get child care support after their baby boy was diagnosed with a terminal illness.

Phoenix, 10-weeks-old, was diagnosed with a rare genetic disorder when he was born.

Since then, Phoenix has been suffering with epileptic fits and relies on a ventilator to be able to breathe.

Simon Marlow, Phoenix's dad, said: "I don't know what to do. It has been horrendous and you just have to grit your teeth, bare with it and carry on.

"We take every day and second as a God send."

Just before Christmas 2018, Phoenix was diagnosed with non-ketotic hyperglycinema - a life limiting genetic metabolic disease.

The family have had to balance looking after their other three children while attending hospital and the lack of child care support has made it even harder to cope.

A spokesman for the Department for Work and Pensions (DWP), said: "We recognise there has been a delay in assessing Mrs Marlow for further financial support and are sorry for this.

"They have continued to receive Universal Credit and the jobcentre is working with them to make sure they are getting all the support they are entitled to."

Simon and Amanda, from Woodley, suddenly stopped receiving payments from universal credit for child care support and say they didn't receive a letter to say this.

The 39-year-old has had to take days off from work to look after their other three children which results in less income for the family.

However, a spokesman for DWP said: "Our thoughts are with the family at this difficult time.

"We are in contact with the family to arrange a home visit as quickly as possible." 

In November, the family were informed there would be delays to any payments being made due to their GP not sending medical documentation in time.

However, Simon has provided proof that their baby is receiving treatment at Royal Berkshire Hospital and that the family have had to take time out of work to look after their children.

He added: "We haven't stopped crying. My wife is in absolute tears and just doesn't have the words to think of what to say. It is so hard.

"It is absolutely disgusting. I just can't cope with all of the stress. No one should have to go through anything like this."