Parents campaign to support unit at hospital in memory of baby son

Then he suddenly stopped breathing and three days later his parents were told the terrible news that their precious baby was brain dead.

"No one seemed to have a clue why he died. They couldn't seem to find any explanation," says Charlie's mother Davina, herself a midwife.

Then a week later the family received a call saying that Charlie, in fact suffered from a rare metabolic condition.

He had MCADD, a rare inherited disorder, which meant he was unable to break down fat properly leading to seizures and breathing problems.

If MCADD is not identified and treated early, children may fall into repeated comas with complications including breathing problems, seizures, brain damage or sudden death

About one in 10,000 babies born in the UK has MCADD. Newborn screening throughout England identifies about 60 cases each year.

After Charlie's death it emerged that both his parents, Davina and Steve, were carriers which meant he and his brother had a one in four chance of having the condition.

"It is an easily treatable condition if it is diagnosed in time, sadly for Charlie and more heart-rending for us is that the condition is usually picked up when the baby has the heel prick test at around five or six days old," says Davina.

Charlie's death devastated the entire family, especially his parents and eldest brother, five-year-old Harry.

"It was hard to explain to Harry and his three-year-old brother Adam what had happened to Charlie, especially as he had spent time at home with them."

The Mortimers felt they needed to do something to ensure that their tiny baby's memory lived on.

"I came up with the idea of setting up the Charlie Mortimer Memorial Fund. We needed something to focus on. We needed to make sure that Charlie's short life actually meant something."

Charlie spent three days in the paediatric intensive care unit at the Leeds General Infirmary and the Mortimers decided they wanted to raise funds to improve the accommodation for parents there.

"When your child is in PICU they are only usually there for a short time and so you need to be there all the time in case difficult decisions have to be made. There was somewhere for us but it was pretty grim. Being there is something most parents want to forget so we felt it was something we could raise money for."

They have already raised nearly 7,000 since Charlie's death last August with a number of fund-raising events.

"It has really helped Harry; he has been able to focus on something positive out of Charlie's death."

The Mortimers have also been helped by their faith, but even as a part of a strong Christian family, Davina says she did struggle to deal with his death at first.

"I had a lot of questions, but I realise that I will have them answered one day and I don't think I could have coped without my faith."

Davina is now putting all her energies into organising a charity auction being held on Friday at the Milton Rooms, Malton at 7pm. Admission is 3.

"I started by writing to local businesses asking them for vouchers or donations for the auction. Then I decided to write to famous people. I didn't expect to get any response but it's been fantastic.

Among the 60-plus lots is a signed Manchester United football, a two-week stay in a Florida villa, a week's holiday in a Devonshire cottage, the chance to become a zookeeper for the day at Flamingo Land and corporate invitations to watch Leeds Rhinos and Hull FC rugby matches.

Celebrities such as Torvill and Dean, Eric Clapton and James Corden have shown their support by sending signed memorabilia.

The full list of auction lots can be seen on Facebook – "prayers for Charlie Mortimer" or people can email charliemortimerfund @yahoo.co.uk.

"We will continue to hold three or four events every year to raise money for the PICU and make sure that Charlie's memory stays alive," says Davina.