A 12-DAY-OLD baby has died from a rare condition leaving devastated parents distraught.

Willow-Grace Dickinson died on April 1 when she was just 12 days old at a hospital in Cardiff.

Just five days after she was born young Willow-Grace was diagnosed with non-ketotic hyperglycinemia – a rare, inherited metabolic disorder.

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The condition only affects one in 760,000 babies worldwide and Willow-Grace’s mum Sophie Wheaton and dad Jayden Dickinson said they “never expected” it.

Sophie told WalesOnline: “It’s something we never expected – especially as it was not known about.

“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.”

The doctors told Sophie her baby was fine and was behaving normally but on March 24 she stopped eating.

Once she was rushed back to hospital she was put on drips and a tube to treat an infection but the next day they were doing all blood works on her, CT scans, lumbar puncture.

A few days later she had an MRI scan and Sophie was told that baby Willow-Grace had a non-treatable disorder – non-ketotic hyperglycinemia.

Only two hospitals in the UK deal with the rare condition and the doctors had to refer to a hospital in Birmingham to confirm it.

Her disbelieved parents were shocked that there was nothing that could treat it and that their baby girl couldn’t be saved.

After receiving the heartbreaking news on March 26, the the family was told that as soon as medical tubes were removed from her she would die within the hour.

Sophie and Jayden stayed in the children’s ward with Willow-Grace and did some hand and feet moulds.

The devastated mum described the five days as “really hard” but tried to act normally with her newborn.

Despite being told she only had an hour, Willow-Grace lasted five days, before passing away on April 1.

Since the tragedy, Sophie has urged other mothers to undergo as many checks as possible if they’re concerned during pregnancy.

Given that non-ketotic hyperglycinemia is a genetic disorder, one parent will carry the gene.

Something to look out for, Sophie suggested, is low movements in pregnancy as this can often signal a condition.

Willow-Grace’s grandmother, Joanne Stephens, has started a fundraiser for the tot to raise money for funeral costs.

On the site she wrote: “Willow-grace was only 12 days old when she sadly passed away. I’m hoping everyone could help Jayden and Sophie give their beautiful only daughter the send off she really deserves.

“As we all can imagine this is going to be one of the hardest things they will have to do and I want to be able to help them I any which way I can.

“I’m not asking for a lot as I know times are hard but every penny will count.

“Let’s show Jayden and Sophie that we are behind them every step of the way and they aren’t on their own.

“Fly high in paradise princess Willow-Grace.”

You can find Joanne‘s GoFundMe page here.