JEAN Moody hasn't had a full night's sleep in four years – her little son Shane, who has cystic fibrosis, can wake up to 15 times a night.
Shane has only slept through twice in his short life – and on both occasions Jean found herself waking up anyway because she was worried he was so quiet.
Shane's elder brother, Aaron (6), was also diagnosed with cystic fibrosis – but he's never sick, says his Mum, who also has two other children, Suzie (11) and Gavin (2).
While she was pregnant with Shane, Jean, a former restaurant manager, was told that since Aaron had already been diagnosed with the condition there was a one-in-four chance Shane would be affected.
Sure enough, shortly after he was born on December 12, 2008, the tests came back positive – Shane was just 11 days old when he was diagnosed with the same strain of cystic fibrosis that Aaron had, recalls Jean, but it affected him very differently to his brother.
He's constantly ill, says Jean (31) – and has endured a number of different health problems since a very young age: "He was put on special medication for cystic fibrosis straightaway.
"He had to have that medicine before every bottle, so I used to mix it into apple puree and try to spoon it down his throat.
"The medication helped extract the fat his body needed from his food because his pancreas was not working properly.
"The little granules could get stuck in his gums and make them sore – it was a very stressful time.
"Shane was completely different to Aaron. He was constantly crying. His chest was always at him and he was on a lot of antibiotics.
"From the time he was a baby he had a recurring chest infection and he kept being put on antibiotics and nebulisers because the cough didn't go away – it continued up to this day.
"He's had to have physiotherapy every day since he was a baby to clear the phlegm from his lungs."
Only a few weeks ago, doctors discovered that Shane had an fungus infection in his lungs, and that it was this that was causing the coughs.
Since the age of two, Shane has had a prolapsed bowel, which causes some pain and sometime bleeds: "There's no operation in Ireland that can resolve this, though I understand there is one in the UK."
His sleeping pattern is also so poor that he has been brought into hospital for night studies to monitor his breathing.
At the age of two Shane was diagnosed with asthma – he's on an inhaler every day.
"Shane has eczema as well as the asthma and the prolapsed bowel. He's on medication for a number of different things.
"At the moment he's on six nebulisers and two inhalers a day.
"I have to rub five or six different creams in for the eczema and he has to have a bath every day.
"He's also currently on medication to clear the fungus in his lungs and we're waiting to see if it'll start to grow back again once the course of treatment is over – he's been on it for about five weeks so far and it finishes up shortly. Then he has to have a blood test to determine whether it is still present in his body.
"He's in and out of hospital a good bit too and you have to manage things, you have to get along."
In the past year alone, the four-year-old has been in hospital about five times, his mother says, each time for a week or so: "They have had to train me to give him his medication intravenously. He has been to see several surgeons about his prolapsed bowel and they say there's nothing to be done.
For the night waking it was suggested that we give him something to make him drowsy and help him sleep but it was affecting him during the day – and it didn't work at night."
The effect on Jean and the other children in the family is significant she says – and she's worried about how his condition will affect his school attendance: "It's hard – I can't go anywhere without him. People are afraid to mind him because of the prolapsed bowel.
"It comes out when he goes to the loo and has to be pushed back in. He wasn't able to start school this year as a result.
"He's five this Christmas, but when I sought medical advice I was told he'd have to learn how to put it back in himself.
"Otherwise he'd have to be trained into a rigid toileting regime where he'd go to the toilet before and after school but he's far too young to do any of that.
"The doctors feel the prolapsed bowel should regulate itself but it has not done so and sometimes it bleeds.
"I cannot go anywhere without him and I cannot leave him anywhere with anybody."
Jean's mum is a great support – she is the only person permitted by Shane to accompany him to the toilet, says Jean – however, her Mum lives in Dublin, a significant distance from the family home in Ballivor, Co Meath.
People are very helpful, but they can't be there all the time: "I have seven brothers who are very good, and his Dad helps out when he is off work. My partner's family are also very supportive – they're very good to Shane.
"Shane takes a lot of my time and attention. I know the other kids feel that."
He hates being sick all the time, says Jean, but somehow, despite the endless illnesses, he manages to stay chipper: "He's fantastic at the same time, he's a real little trooper. The nurses often comment on how good he is and how he lets them do what they need to do."
The illness aside, she says, he's highly sociable and happy little boy, who's very funny and not in the least bit shy: "He's full of beans and when he's well, he's a little dynamo who loves getting into everything and loves the rough and tumble of life.
"Temple Street hospital has been very good to him all the way. When he's sick, they're brilliant."
However, says Jean, the future is deeply uncertain: "If this fungus continues to grow it'll cause irreversible damage to his lungs and I'm worried about that."
She's found some solace in meditation: "I meditate a lot and I do Hapa Yoga on a Thursday and that calms me down. I found it really helps and the members of my Yoga group are very supportive."