Little Kailo Moore faces a race against time to find a donor for a life-saving liver transplant.
Doctors at Birmingham Children’s Hospital are so worried about the 13-month-old that they hope to carry out the operation in as little as four weeks’ time.
Parents Catreena Kewley and Joseph Moore have their bags packed at their home in Farmhill, Douglas, and are waiting for the call which could come at any time.
Kailo has been diagnosed with biliary atresia, a rare life-threatening condition which means blockages in his bile ducts stop bile from flowing from his liver.
This causes bile to remain in the liver, where it starts to destroy liver cells.
Catreena, aged 21, said waiting for the transplant was a stressful time for the family: ‘It’s scary because doctors might find the donor liver is not compatible and there’s a risk of thrombosis.
‘And I’m worried about the side effects of the medicines he will have to take afterwards.
‘But at the end of the day I want the operation to be as soon as possible because I don’t like seeing him suffer now either.’
The couple first realised there was a problem when Kailo remained jaundiced a couple of weeks after he was born at Noble’s Hospital last August.
At three weeks old, he started having tests, firstly at Noble’s and then in Birmingham, to diagnose the cause.
And when he was just six weeks old, Kailo underwent a six-hour operation to have his gall bladder and blocked bile ducts removed, and replaced with a segment of his small intestine.
Catreena said: ‘I blamed myself in the beginning because I carried him, but they don’t know what causes the condition.
‘I didn’t drink and didn’t smoke while I was pregnant. Some people do lots of bad things and their baby is fine.’
The couple are keen to raise awareness of the symptoms so other parents will pick up on them early.
As a result of the condition, Kailo has also had a swollen abdomen and pale stools.
He has not put on any weight since May, he has little energy and it is stopping him from starting to crawl.
Kailo has been on the transplant waiting list since July, when his parents were told it could take six months to find a suitable match.
Joseph, aged 23, is also undergoing tests to see whether he would be able to donate part of his liver, which would regenerate and rebuild to normal capacity in Kailo’s body.
He said: ‘Kailo’s name means good health. We hope we can get back on our feet and for a better year next year.’