Up until now, Irish Cystic Fibrosis sufferers have had to deal with the fact that, although we have the highest cases of CF in the world, we have among the worst facilities - and the lowest life expectancy.
Tired of empty promises from the HSE, Kerryman Joe Browne founded Build4life - and in just four years the charity has raised €2.2million and is opening a state-of-the-art CF treatment unit in Cork University Hospital (CUH) this month.
Witnessing a close friend pass away from CF when she was just 23, Joe was determined that his son, Padraig, also a CF sufferer, will receive better treatment - so his next project is to build a children’s CF treatment centre at the southern hospital.
When Joe learned that his son had Cystic Fibrosis he was terrified, and it took a year for him to get his head around the news.
At the time of Padraig's diagnosis, Irish CF patients’ life expectancy was in their early 20s, while patients in Canada, the US and UK could live into their late 30s and 40s.
The reason for this is the below-par CF treatment cilities here, which Joe witnessed when visiting his friend, Mary Hand, who was just 23 when CF claimed her life.
“Padraig was diagnosed at 22 months and it took me a year to get my head around it. It’s a huge shockto any parent,” says Joe, who won this year’s Santa Rita Local Hero award for his charity work.
“I became aware of the lack of facilities in CUH when I was visiting Mary. She did not have her own private facilities, which are crucial for CF patients.
Instead, she was treated in the respiratory ward and there were other CF patients on the ward.”
People with cystic fibrosis are vulnerable to lung infections caused by bacteria. They can pick them up from each other.
So CF patients should not come into contact with each other.
“Mary passed away after two unsuccessful attempts at a lung transplant in 2006,” says Joe.
“She was a beautiful girl and worked so hard to progress facilities in CUH. She also launched a very successful donor awareness campaign.from everybody; the staff were brilliant and did their best but the facilities weren’t there.
“I knew my son would have to use these facilities in about 10 year’s time and I didn’t want him to endure what Mary did.”
So pro-active Joe set up the Build4life charity. He is determined that Padraig will receive the best treatment possible. The aim was to open Ireland’s first dedicated Cystic Fibrosis Treatment Unit in CUH, a plan which comes to fruition this month.
Now CF patients will have private en-suite treatment rooms so they will not have to worry about cross-infection.
“For many years, we had false promises. We were tired of hearing people say they were going to develop the CF unit but never doing anything about it.
“Build4life took matters into our own hands. We said we were going to do it, and we’ve done it - and in a very short timeframe,” says Joe, proudly.
“We’ve done what nobody’s done before us; we’re opening the world’s most advanced adult CF unit in Cork this month.
“I told the medical team at CUH to make a list of the facilities they’d need to make this CF unit the best in the world.
“I didn’t want to just patch a gap, I wanted to future-proof it.
“The therapists, nurses and doctors all came back with their wish-lists, which we fulfilled.
“Each patient will have their own private en-suite room to avoid cross-infection. On arrival, they will be given an ipad with a questionnaire to say how they feel their treatment is going. That way they will be involved in the whole process. “For the rest of their stay, they can use this ipad to go onto Facebook, tweet buddies etc.
There’s a psychological aspect to it; they spend a lot of time in hospital so it makes it less daunting if they know they aren’t going to be bored.”
Build4life is now working to raise €1.5 million to construct a Children’s Unit in CUH. “Currently, my son doesn’t attend CUH. I’m raising all this money for it but he goes to Tallaght Children’s Hospital because its facilities are so much better,” explains Joe.
“We’re appealing to the National Lottery Fund for €300,000. We’re saving the Irish Exchequer and the HSE millions of euro so we’re hoping they will send us the cheque.
“It is a progressive illness so things don’t improve with age, there’s no Walt Disney ending. But Build4life believes that by providing the facilities we’ll be adding years onto the lives of people with Cystic Fibrosis.
“It’s exciting times - there are huge advances being made in CF drugs and I think the new health minister, Dr Reily, is going to make changes not only to the CF facilities, but to the whole health system.”
Log onto www.build4life.net to make a donation.
Sunday World Magazine