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'Our ultimate hope is that one day there will be a cure for Cystic Fibrosis'

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Georgina and Rebecca Daly. Photo: Gerry Mooney

Georgina and Rebecca Daly. Photo: Gerry Mooney

Georgina and Rebecca Daly. Photo: Gerry Mooney

Even though 14-year-old Rebecca Daly faces serious health challenges, she remains upbeat and resilient.

And even though those challenges occur on a daily basis, she does not believe they set her apart from her peers. "I'm not special," Rebecca says, "I'm just like any other kid my age."

However, it's not certain that this is absolutely true, because Rebecca is very smart; she's articulate, perceptive and astute, and that's not always the case with young teenagers. She's pretty to boot, with thick, shiny hair and lovely features and she is also blessed with cool dress sense and a ready smile. Of course, there are occasions when the fact that she has cystic fibrosis (CF) gets her down - sometimes big time - but that's only natural. What helps is knowing she has a loving family who support her.

Her mother Georgina says CF was not an issue in their family until months after the birth of her fourth child Paul, some 20 years ago, when he was diagnosed with the condition. According to Philip Watt, CEO of Cystic Fibrosis Ireland (CFI), this is "an inherited chronic disease that primarily affects the lungs and digestive system of about 1,200 children and adults in Ireland. A defective gene and its protein product cause the body to produce an unusually thick, sticky mucus that clogs the lungs and leads to life-threatening infections; it also obstructs the pancreas and stops natural enzymes from helping the body break down and absorb food."

He says Ireland has some of the most severe strains of CF, and the highest incidence of the disease in the world.

Rebecca, who was born five years after Paul, was found to have the condition when she was still an infant. Nonetheless, she remained in fairly good health until she was nine, when she was also diagnosed with type 1 diabetes.

"Then we started down the road of frequent hospital admissions," says Georgina. She is referring specifically to the Oak Ward at the National Children's Hospital in Tallaght, where patients over 12 months of age, with certain acute medical conditions such as asthma, CF and diabetes are treated.

"Rebecca gets repeated, serious chest infections," says Georgina, "and these require antibiotics to be administered intravenously (IV), so she has to stay in the hospital for at least two weeks each time. Down the line, she will probably need a lung transplant."

In hospital, Rebecca needs to be cared for in an isolation room to avoid the risk of further infection. This poses emotional and social issues for any child, but it is especially hard on teenagers. "Though she is very bubbly by nature," says her mum, "Rebecca has her moments. It can be tough if she's stuck in hospital seeing pictures of her friends out and about. Recently, her class went to the Botanic Gardens and she saw them on her phone having fun. No one means to leave you behind, but modern technology, which is fantastic, can bring home what you are missing."

Rebecca agrees it can be difficult, particularly while she is in hospital. "If I can, I go to the play areas, but I can't if there are other patients there. You don't get to talk to other kids, but there are some lovely nurses in the hospital."

Getting a decent education is also an uphill battle. Georgina says that Rebecca has missed an awful lot of formal schooling in the last few years, but she gets some tuition in hospital. "Her teacher at Tallaght emails her teachers at mainstream school, but it's tough now she's in secondary and trying to keep up with so many subjects," says Georgina.

And keeping up is important for someone as bright as Rebecca, who is still not sure what she wants to be when she grows up. "Firefighter?" she quips. "Or to go travelling? I'd love to travel."

She says her favourite subjects right now are geography and history. "I never really liked history but now I have a teacher who is funny and makes it really interesting. I like the Middle Ages best of all. And I have a great geography teacher who really knows what he's doing."

In the meantime, Rebecca has to adhere to an extremely rigorous medical schedule, which currently, following a recent hospitalisation, involves two hours of at-home IV antibiotic treatment three times a day.

During these sessions, she uses a nebuliser for 20 minutes and a device known as a "flutter" to help her bring up some of the sticky mucus that makes breathing so difficult.

"It's hard on her," says Rebecca. "If I start her IV by 6am, I can have her ready for school at 8am. But then she has to be back for her next session at 2pm and for another one at 10pm. So she is very much tied to the house."

One redeeming factor is that Rebecca has a wonderfully supportive family, not least her big brother Mick Daly, who played soccer for Manchester City as a teenager and is now a stalwart of Drogheda United. He is about to celebrate the first anniversary of his gym, Anatomic Fitness in Castleknock, by holding a "birthday bash" with music, dancing and prizes to raise funds for CF.

Mick explains why: "We are a very close family. I used to share a room with Paul [who is doing a degree in computer application at DIT] ever since I was a kid, and now we share a house. We are all very protective of Rebecca, especially as she is the youngest. Throughout the years, whether we did marathons or 5km challenges, we fund-raised for CF. Since opening the gym, I've met some fantastic people, so I thought it was an ideal opportunity to celebrate our first birthday, while raising funds for CF Ireland."

He will be ably helped in this by his entire family. His mum Georgina says the main motivation is to raise awareness and to generate funds, which will help fund CF research.

"Every day, you hear of success stories," Georgina says. "There are new drugs and new techniques. The consultants are always networking and coming up with new therapies. With Paul, it was a matter of putting him over my knee and tapping his back. Now there are all sorts of gizmos and gadgets. But our ultimate hope is that one day there will be a cure."

The Anatomic Fitness Birthday Bash takes place on November 14, at the Crowne Plaza, Blanchardstown, D15. Tel: (085) 759-3029, or see mycharity.ie/event/cysticfibrosisanatomic. For information or to donate to Cystic Fibrosis Ireland, text HelpCF to 50300, or see cfireland.ie

Sunday Independent