Ashley Arnold was only 22 weeks pregnant when she found out her son would die before she could give birth.

The mum has now spoken out about her heartbreak at losing her son and says she now determined to raise money for charity in honour of him, Cara Simmonds reports.

Warning: Sensitive image below

When Ashley found out she was pregnant 'everything was normal'.

The 35-year-old full-time mum from Courtneay Road, Tovil, said: "I paid for a private scan at 16 weeks, some abnormalities were picked up.

"I was referred to specialists in Medway hospital, and they said a small part of the bottom of his spine was open. I was planning to have an operation whilst still pregnant that could seal the baby's back."

It was when she was referred again to King's College Hospital in London, that doctors told her that her son, whom she had already named Ronnie-Ray, had full spina bifida - a rare condition that according to Public Health England, is found in about six babies out of every 10,000.

Spina bifida is a fault in the development of a baby's spinal cord and surrounding bones, which leaves a gap or split in the spine. Their spinal cord may have not formed properly, and can also be damaged.

This condition could lead to the child having to use a wheelchair, loss of skin sensation, poor bladder control and a change in brain development, which causes an impact on learning and behaviour.

The mum of eight explained: "The top of his neck to the bottom of his back was completely open.

"He had no kidneys, his lungs weren’t developing, he had a hole in his heart and lemon shaped head.

"I got to 22 weeks before they told me he would die regardless of what I did, whether I wanted to keep him or not.

This heart-breaking news came at the same time as she chose the name Ronnie-Ray for her baby.

However the Maidstone mum believed that 'termination was not an option' for her.

"It was absolutely devastating when they said to me you have the option to terminate.

"I went home and researched for weeks. But doctors said because he also had Potter's syndrome he wouldn’t live past a couple of hours after being born.

"The choice was taken away from me then, obviously I don’t want to see my son go through that, so I had to stop his heart."

Potter syndrome is a rare condition which causes deformities to occur when there is too little amniotic fluid in the mother's uterus during pregnancy.

The most common underlying cause of Potter syndrome is the underdevelopment or absence of kidneys.

Doctors also told Ashley that because of the stage of pregnancy she was at, Ronnie-Ray would be put down as a foetus on his death certificate.

"I point blank refused. He is not a foetus, he is a child, he is my son.

"I made them wait another two weeks, even though they told me not to, just so I could have him down as a person on the records.

"This was going to be on my terms, not theirs.

"I had to give birth normally and he had a lovely send off."

Ronnie-Ray sadly passed away on August 11, last year.

Now Ashley is determined to raise £2,000 for families who are affected by spina bifida, to try and keep her son's memory alive.

She says: "You can look at it in a bad way, or you can make something positive out of it. And that is what myself and my kids want to do.

"We only had him for a little while, but we still had him. We want to make sure it’s not a bad thing.

"If we are helping other people, that is something good coming out of something bad that has happened to us."

Ashley is raising money for the charity Shine, which provides specialist support for families both before birth and throughout the life of a child who is living with spina bifida.

The fundraiser will be held at Boughton Monchelsea Village Hall, Church Street, on May 14 at 12pm.

"We will have raffles, dinosaurs, glitter tattoos and lots more."

Ashley says she's determined to hit the £2,000 goal - which would go towards supporting at least 10 families with spina bifida.

"So far my children have raised £228 from doing both a sponsored silence and walk at their schools.

"My brother has even been looking into doing bushtucker trials and jumping out of planes!

"I couldn't have better people around me to be honest, it’s brilliant.

"I’m not giving up until I hit the target, that’s the minimum of what I want to do!"

More information about the fundraising event can be found on Ashley's Facebook page here.