A VERY special little boy from Blaenavon with two rare genetic disorders was branded "the mystery baby" when he was born as doctors couldn't figure out the nature of his condition.
Baby Axel, now eight months old, was born late last year with both Prader-Willi syndrome and Klinefelter syndrome - conditions which both affect his physical development, but also conflict with each other.
As both conditions are rare, particularly at the same time, parents Courtney Davies and Peter Gowell faced weeks of uncertainty as doctors tried to determine exactly what was wrong with him.
Baby Axel picture: Courtney Davies
Ms Davies said: “When he was diagnosed, they said it was very rare to have one of them let alone them both.
“He spent a month in hospital when he was born – we spent Christmas there.
“He was called 'the mystery baby' because they didn’t know what was wrong with him – it took a long time for him to be diagnosed.
“As Axel is our first baby, we’ve become used to this situation because we don’t know any different.”
At seven months old Axel - who has to be tube-fed as he will not take milk from a bottle - was also diagnosed with plagiocephaly and brachycephaly, which affects the size and shape of his skull, meaning he has to wear a special helmet.
A happy Axel. Picture: Courtney Davies
Ms Davies said: “If we weren’t to get the helmet his functions could be affected as he gets older.
“You have to wean them into wearing the helmet – he spends so many hours with it on and then we take it off, we leave it off for half an hour before bed.
“Currently we are at the end of the weaning process but the other night before bed we noticed a red mark on the side of his face which is normal.
“After half an hour the mark still hadn’t gone so we left it overnight and the red mark was still there in the morning.
“We went to the clinic yesterday and the woman has reshaped the helmet, he’s also teething so he’s constantly hot, but he doesn’t seem bothered by the helmet.
“With the helmet he is likely to make a full recovery, the doctor has estimated eight to nine months, but it depends on how he grows”
The helmet - which costs £2,250 - is not funded by the NHS, and now Ms Davies’ cousin Kimberley Griffiths has started a gofundme page to help the family pay it. For more information visit https://tinyurl.com/4zp2eyk3
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