Helping hand for ill children

Campaign to raise funds for Temple Street Hospital will ease strain for parents like Jean Moody, who has two sons with cystic fibrosis, says Helen O’Callaghan.

“It calms me down,” says the mum-of-four, who has two sons who have cystic fibrosis (CF), which ravages lungs and the digestive system.

Doctors say Aaron, six, is a ‘miracle child’ — unlike most children with CF, he never gets sick, never picks up infections. His four-year-old brother, Shane (pictured right) is the opposite.

Diagnosed at 11 days old with the same strain of CF as Aaron, Shane is medicated with six nebulisers a day and is on two inhalers twice daily.

He has asthma, eczema and a prolapsed bowel.

“He needs six creams rubbed on each day for his eczema. Every time he goes to the toilet, some of his bowel comes out and has to be put back in,” says Jean, who does daily physiotherapy on both boys, to stop build-up in their lungs of thick mucus, characteristic of CF.

Shane has been sick since November 2012, and within the last two months doctors have discovered he has an airborne fungus growing in his lungs. They’d presumed his infection flare-ups were due to asthma. “He was put on lots of different steroids and inhalers. I’d just get him better and, two weeks later, his chest would be at him again. They’d put him on a stronger inhaler, steroids and antibiotic, and he’d be better for a week.

“Seven weeks ago, he got really bad. He was constantly coughing. He got upset, crying that he wanted to get better. He couldn’t walk around, or go up or downstairs. He’d wake at night coughing — the phlegm so thick you’d be panicking, saying ‘breathe, Shane, breathe’.”

Admitted to hospital for a “complete overhaul”, a blood test revealed the fungus, which originates in cut grass, straw or stagnant water. Shane is allergic to it. Now on medication, his mum says he’s so improved he’s a ‘different’ child.

“When he’s well, there’s no stopping him. He’s a barrel of energy and loves the rough-and-tumble with his two brothers — the youngest, Gavin, is two. Shane’s a great little character. He gets into all sorts of trouble, from bashing his little brother to wrecking the house. When he’s sick, nurses comment on how amazing he is — he sits up and lets them do whatever they need to do,” Jean says.

Shane was due to start primary school this September, but can’t due to his prolapsed bowel. It struck two years ago, reversing his independence in the toilet.

The challenge of lack of services is typified in the response to Shane’s bowel issue. “I’ve been told they don’t do the operation [to rectify it] in Ireland, that I should teach him to fix the prolapse himself. How can you get a five-year-old to wash his hands before going to the toilet, put on gloves, ensure the gloves are clean, go to the toilet, fix the prolapse, take off the gloves, wipe his bum, throw the gloves in the bin and then wash his hands? I don’t think you can,” Jean says.

Her sons’ condition has impacted most on their sister, 11-year-old Suzie. “She doesn’t get as much attention as the boys. When they’re in hospital, she goes to anyone in the family who can mind her. She mightn’t see me for a week.

“Gavin is too young to understand — he always stays with my mum.”

With her partner, Garrett Pimlott — a Dublin bus employee — working away from home, the Meath-based mum is full-time carer for the two boys.

“I just have to cope. I’ve been doing it since they were babies. When they’re well, I see how great they are. I just fight to keep them well.”

Both boys regularly attend Temple Street Hospital. Now, ahead of Halloween, comedian Neil Delamere has joined forces with ‘Trick or Treat for Temple Street’, asking families, schools and workplaces nationwide to raise funds for hospital services.

You’re asked to dress up your little ones, don a costume of your own, or show off your monster moves on the dance floor — have a party to help sick children. Funds will go towards facilities such as a parents’ room, where staff can discuss a child’s prognosis privately with family, and satellite classrooms on wards for children who can’t access the main hospital school. The campaign is supported by MiWadi.

www.trickortreat.templestreet.ie.