Cystic Fibrosis row: Battling with a ‘ruthless’ disease

Charlie Kelleher was in hospital for his first birthday and antibiotics have loomed large in his first two years of life.

“He was hospitalised three times for the first year-and-a-half and at one stage, had eight to 10 weeks of antibiotics. Augmentin after Augmentin after Augmentin,” says his mother, Adele.

He’s been on a drip numerous times and Adele has become quite adept at hooking him up at home. Occasionally, it’s hard to find a vein and get a line in and he’s had to have an anaesthetic more than once. It’s all very stressful, probably more so for Adele because while Charlie’s memories are short-lived, hers are hard to shake.

“It’s very distressing, he hates it. At one stage when he was in Cork University Hospital, they had to insert six catheters in four days because they kept popping out. They tried one hand, then another, than a foot, then the other, but the lines kept collapsing. It’s awful to watch.”

Charlie was three weeks old when Adele, from Carrig na bhFear, Co Cork, found out that her “perfect newborn child” had CF.

She describes it as a “life-threatening, ruthless disease”.

“There’s the battery of pills for nearly every organ to keep them working and a nebuliser to help the lungs. And then there’s the physio and the other medicines.

“What is a common cold to most of us can send a person with CF into hospital for a number of weeks. Unfortunately, a hospital these days is the most dangerous place in the world for a person with CF, as the facilities in Ireland are completely substandard.”

She’s relieved her toddler’s still in nappies because it means she can avoid the toilets at CUH. “I’ve seen kids with CF queuing for the toilet and it’s not hygienic.”

While she can’t cure her son, the “next best thing” she says, is to create the conditions that will help him lead a healthier, longer life. This led to her involvement with CF charity Build4Life.

She threw herself into fundraising, she says, and is appalled at the row that has developed between the charity and CUH.

The charity wants a contract signed ringfencing at least eight CF beds in the 20-bed ward it has funded; the hospital is not prepared to ringfence any.

The hospital has offered “priority access” to CF patients and is pushing for a clinical operational policy on the usage of the beds that it says will allow skilled staff to be available continuously to treat CF patients.

However, Adele says Build4Life fundraised on the understanding that the beds would be ringfenced and the public donated on this understanding too.

“They can’t hand over the money for anything less. It’s like fundraising for diabetes and then giving the money to the dog’s home.”