'Our baby died at just 12 days old due to ultra rare condition – now we're speaking out'

Grief-stricken new have bravely spoken out about the devastation of losing their baby to an extremely rare condition just days after she passed away.

Willow-Grace Dickinson was just 12 days old when she died on April 1 from rare disorder non-ketotic hyperglycinemia, which she developed just five days after she was born on March 20. The disorder, which affects approximately one in 76,000 worldwide, is caused by a defect in the glycine cleavage enzyme system. The defect causes glycine to accumulate throughout the body, especially the brain.

The tot's mum Sophie Wheaton and dad Jayden Dickinson, of New Tredegar, in Caerphilly, , have spent the short time since their baby passed away in shock. But the two have decided to speak out in hopes that their experience could inform other parents of the deadly condition.

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Sophie told Media Wales: "It's something we never expected – especially as it was not known about. We were in Prince Charles Hospital in Merthyr before being transferred to hospital in Cardiff. I had her on March 20 and from birth she was never right. She never cried, she never had any movement, didn't open her eyes. Her breathing – she was holding her breath and breathing really fast.

"We left the hospital three days later on March 23, taking her with us, and they said she was all right and that it was normal for a baby to do what she was doing. I had a C-section early and they said she could still think she was in the womb. When we got her home she went off her feeds and wasn't eating so on March 24 we took her back to Merthyr hospital.

"They put her on all the drips and everything, and on a tube, and were feeding her for an infection at first. Later that day, early hours of the morning on March 25, they transferred her to Cardiff hospital. From there they were doing all blood works on her, CT scans, lumbar puncture, and it took three days for everything to come back fine."

"They decided to do an MRI to have a clearer picture of her brain and that's when they told us she had non-ketotic hyperglycinemia. They explained to us that it was acid that goes up through her spine and eats away at her brain and her body can't break down protein.

"They told us her condition was non-treatable and that there was no fix to anything. At the time they explained the condition and we thought: 'There has got to be something that treats it'. It was a lot to take in as they said they don't even deal with it in that hospital. They had to refer to a hospital in Birmingham to confirm it.

"There's only two in the UK that deal with that case. They kept us in Cardiff but everything that happened there they had to go through advice in Birmingham to be able to diagnose it." After receiving the news of Willow-Grace's condition on March 26 the hospital warned the family that as soon as medical tubes were removed from her she would pass away within the hour."

But, remarkably, she lasted five days, before passing away on April 1. Sophie said she and Jayden had "tried doing everything" parents would do with a newborn before their daughter died, but that she felt she was "pulling away" knowing that Willow-Grace would soon pass away.

She said: "We had expected her to go but it was a bit harder to process everything when she lasted so long," Sophie said. "We were not allowed to leave the hospital. She stayed in the children's ward and there was a side room where patients who are going to die can go so families can have their privacy.

"We didn't leave her side. We stayed with her, holding her, did some hand and feet moulds, painting with her, tried doing the normal things like bathing her, even though there was no movement, no crying. We just tried doing everything normal. It was nice to spent time with her but it felt like I was pulling myself away because I knew she was going."

"The whole five days we were there were really hard. Nobody can tell how long someone is going to last. The one thing I wanted to do was hold her when she passed away. It was a lot to take in. After she lasted so long I decided I would like to take her out in a pram, somewhere close where nobody could look at her and say: 'She's not looking good', but come the end of April 1 she passed away and we weren't able to take her out and do more things."

"But they were brilliant at the hospital in Cardiff – they offered everything they could." Sophie offered advice to others to undergo as many checks as possible if they are concerned during in the hope that others will avoid "what they have to go through now".

She said: "The condition isn't known at all and there could be so many people in the who carry the gene but just don't know as they haven't met someone with the same gene. We've had to have our bloods taken to confirm we have the gene. They told us there had never been a case where two people don't carry the gene – it's always to do with genetics. It can't just happen.

"Low movements in pregnancy is a big thing. People get scared to go and get checked over low movements but I had a lot through pregnancy. They did say that low movements is a sign of having a condition. I'd like everyone to know that if they are experiencing something to always go and get checked – never consider not going.

"Through pregnancy there is a thing that people get offered where you can get testing from the fluid around the baby from 11 to 14 weeks. Everyone gets an option to have that done but most people say no. Had I done that when I was pregnant then I would have found out a lot earlier.

"I'd advise people to offer up and take all the tests that they are offered so that nobody has to go through what we currently have to go through now."

Willow-Grace's grandmother, Joanne Stephens, has launched a GoFundMe page looking to raise money for her funeral. People can donate .