The Children’s Miracle Network.

Niamh and Mairead Condon

Interviewed by Sue Leonard.

Published in The Irish Independent 9^th march 2009.

Every Tuesday, Niamh Condon has to miss a day of school. The 14 year old from Knocklong in County Limerick, has a rare condition called Hurler Scheie Syndrome, and she has to spend her day in Limerick District Hospital, where she receives an enzyme by a drip.

“I will be there for four or five hours,” says Niamh. “It’s very boring. I tend to do my homework there, and I read. I have nearly all the books in the library read.” she says.

The worst thing, Niamh tells me, is missing class.

“Especially now that I’m in secondary school; the John the Baptist Community School. I have more to catch up on with all the different subjects and teachers.

“A couple of my friends take down all the notes and stuff, but on Wednesday night, when I have my normal homework, I have to copy down all the notes they did for me on Tuesday as well. There is an awful lot to do.”

Niamh is extremely diligent. She insists on going into school on Tuesdays, to attend two classes before she goes to the hospital.

“She’d love to stay longer if she could,” says her mum, Mairead. “Niamh loves her schoolwork. She wants to do well in life.

“It is not a joke going into hospital every week. She has to wait to be set up on the drip; that can take two hours, or longer if there is someone in the day unit who is sicker than her. The enzyme takes four hours to administer, and she has to see a doctor after that.”

When Niamh was a baby she seemed perfectly well.

“We hadn’t a clue there was anything wrong with her,” says Mairead. “Then we noticed that she couldn’t hold her hands out straight. There was some stiffness there. They did every test in Limerick, but they couldn’t find out what was wrong.

“So they referred us to Our Lady’s Hospital for Sick Children in Crumlin. And Dr Riordan, the Geneticist there, sent a urine sample to Great Ormond Street Hospital. He diagnosed Niamh with Hurler Scheie Syndrome when she was six years old.”

This is a rare biochemical abnormality, that affects just one in a million children. Niamh is missing the enzyme Alduranzyme, hence the need for her infusion. There are 30 families in Ireland whose children suffer from one of the mucopolysaccharidosis conditions; known as MPS. They meet regularly thanks for a support group run by volunteers.

It took a while, after diagnosis, to get set up with funding to enable Niamh to receive her enzyme infusion.

“At that stage they were testing the procedure with selected children in England,” says Mairead. “After the funding was set up, it took another two or three years for the enzyme to become available. Niamh was the first child in the South of Ireland to receive it. And meanwhile, she was often sick. She kept getting chest infections.”

At ten, Niamh was frightened of needles. So a small device was fitted under her skin to allow the doctors to administer the enzyme. After nine months, this became infected, and caused a serious infection of Niamh’s heart valves, called endocarditis.

“Niamh already had a bad heart as part of her condition,” explains Mairead. “But that infection has made it much worse. Niamh was extremely sick. She was in Crumlin for almost six months, on a very strong course of antibiotics. She was on four or five different ones, and it has left her with a lot of damage. She now has serious backflow in the aorta and mitral valves.

“Today, at five foot, Niamh weighs 7 stone. When she was in hospital she went down to just under three stone. It happened in the space of a few months. It was very serious. Niamh had to be tube fed. It was a big ordeal.

“Niamh’s activity is now curtailed. She can’t take exercise, and misses out on all the sport at school. She can manage everyday life, but can’t walk far without becoming breathless. Her back hurts too, and she can’t write a lot; for essays she uses a laptop. Not that she ever complains.

“Niamh has never known anything else,” says Mairead. “”She gets on with life and accepts it, in spite of all the knocks. Life hasn’t been a bed of roses, but she is always positive. She’s a treasure.”

With her constant smile, it is no surprise to learn that Niamh has made lots of friends in hospital. All the nurses and doctors appreciate her positive outlook. She was in Crumlin over Christmas four years ago, when she had the heart infection. And during the traditional Christmas ‘ward walk,’ Niamh met celebrities including Brian McFadden.

“That was a huge thrill for her,” says Mairead. “Niamh is a big Westlife fan.”

She also met Suzanne Downey, who’s in charge of publicity there.

“They became friendly, and we try and meet up with her when Niamh attends for her checkups,” explains Mairead.

“Suzanne rang us before Christmas last year, to say she would like to put Niamh’s name forward, along with other children, to go to Florida with the charity Children’s Miracle Network. We said, ‘of course,’ and a week later we were told that Niamh had been chosen to go to represent Crumlin.”

The whole family are setting out tomorrow, (Tuesday 10^th March.) And they’re all hugely excited.

“I’ve never been to America,” says Niamh. “I can’t wait to see Disneyland; and I’m looking forwards to the shopping as well. I think I’ll buy jeans with labels and T-shirts.”

Niamh’s younger brothers, Conor 13, and Thomas, 10, are looking forwards to the trip too.

“It’s tough for them,” says Mairead. “Both boys are big into the GAA, but when Niamh is sick, they have to go to matches with friends or neighbours. Their lives have to revolve around her.”

Niamh future is uncertain; she will, at some stage need heart surgery. But she’s totally upbeat.

“I want to just get on with life,” she says. “Even though I miss one day a week in school, I am determined to do my best there. Eventually I’d like to work with computers. I’m very interested in them.”

Niamh’s dad Francis, hopes that one day she will achieve a degree of independence; and go to college and work afterwards; and maybe, drive a car. As for Mairead, she is just happy when Niamh is at home, and is well.

“That, for me, is a huge thing,” she says.

The priority right now, though, is for home infusion.

“That would make life so much easier,” says Mairead. “The hospital manager is working on raising funds for her. That would be like winning the lottery.”

The Children’s Miracle Network, was started up by the famous Osmond family, to help children with hearing impairments.

“Two of their sons had hearing problems,” explains Conor Byrne, Director of Development with the network. “They started with a telethon; then they decided to do more for children’s hospitals in general. They have expanded and now have corporate partnerships and media partners. The network is worth over 2 billion dollars in America alone.”

The Children’s Miracle Network first appeared in Ireland in 2007, with a radiothon in conjunction with Dublin’s 98FM. And since then there have been further radiothons in Dublin and in Cork.

The network raises money for those extras that make a child’s life more normal in hospital; things such as toys, and murals on walls.

“Some of the money goes on research and occasionally on machines,” explains Conor, who was once in charge of fundraising at Tallaght hospital. “It’s up to the hospitals how they spend their money, but in general it does not replace the funding the government is supposed to be doing. It adds to it.”

Every year the network meets at the headquarters in Florida, with all the corporate and media partners who have helped.

“It’s a way to celebrate,” explains Conor. “And as part of that, a child from every area is selected to represent the children who have been helped. They are the ‘champion children.’

“They are ambassadors for the charity. They get to meet children from all over the world who have been in similar circumstances to themselves. There is a big medal celebration. Each child gets up on the stage individually.

“We have a celebration breakfast, where they are photographed with Disney characters, and they meet with the sponsors. But the children are the stars. There will be one or two events every day, where they are the focus.

“This is the second year children from Ireland have attended. It’s wonderful to see these kids who have been through so much. They have so much energy; so much life.”

It is important for all the families too.

They may not, normally, have been able to have holiday; one of the families who went last year had never been out of Ireland before. It was such a huge event for them.

“It gives families a chance to be together. And that is especially important for the siblings, who may have had a very rough ride. The children’s Miracle Network is about treating the whole family; and not just the child.”

For More information; www.childrensmiraclenetwork.ie

© Sue Leonard 2009.