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 Merthyr hospital, Wales.
Just five days after she was born young Willow-Grace was diagnosed with non-ketotic hyperglycinemia – a rare, inherited metabolic disorder.
The condition only affects one in 760,000 worldwide and Willow-Grace's mum Sophie Wheaton and dad Jayden Dickinson said they “never expected” it.
Sophie said: “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 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 disease – 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 on March 26, the the family was told that as soon as medical tubes were removed from her she would die within the hour.
Remarkably, she lasted five days, before passing away on April 1.
