'Pipe dream' becomes reality as new CF unit opens

Amid fanfare and praise for the efforts of so many in bringing it to fruition, the new €450,000 Cystic Fibrosis paediatric in-patient facility was officially opened at Cavan General Hospital last Friday.

The conference room at the hospital heaved with well-wishers, as well as patients and families of those with CF, as they gathered to witness special guest Minister of Health Simon Harris perform the honours, ably assisted by Minister for Arts Heather Humphreys.
“It’s a big moment, happy times,” chairman of the Cavan CF branch Raymond Dunne told those in attendance. “There is a lovely concoction of emotions among the CF people today. There’s joy, there’s gratefulness, there’s relief, there’s none of the ‘what if’ from years ago.”
Friday’s opening was the culmination of the latest phase in developing CF facilities at Cavan General Hospital (CGH), which is now the envy of many regional hospitals nationwide.
Boosted by fundraising of €350,000 by locals, the occasion was a momentous one for some who only ever imagined such a provision as a distant “pipe-dream”. As Mr Dunne put it, the whole development of facilities was “anchored in generosity”, while the new units themselves, combined with the out-patient facilities added previously, had given “a great many people a great deal of hope”.
Developed in partnership with CF Ireland (CFI) and hospital management, a further €100,000 was secured in National Lottery funding to help get the project over the line.
Work began on reconfiguring the entire paediatric unit back in February of this year, with the new units utilising former office space. The units were designed and built by a team from Rhatigan Architects and Murnaghan Brothers builders with the aim of reducing the risk of infection and cross-infection among patients.
The state-of-the-art rooms are complete with hepa-filtration of air and systems. In return, the paediatric unit has gained an extension and the addition of a bright new play area for young patients.
“A win-win for all sick children and young people attending CGH,” Patricia Duffy-Barber, chairperson of CFI outlined, before Minister Harris took to the podium.
Along with added dignity and privacy, Minister Harris was under no illusion as to the significant difference the new rooms will have on the lives of those with CF in the region.
An emotional Felix Gormley, Cavan branch member since before his son Felix Jr died from CF in 1979, said when he and others first started out campaigning, little was known about the condition.
“The ordinary GP knew nothing about it and, when things began to deteriorate, you were told to just let it slide.
‘Make them comfortable and let it slide.’ Those were heart-wrenching words to hear, on young parents as well, it was very difficult. Thankfully that’s changed now and today is something very special!”
His heartfelt sentiment was shared by fellow CF campaigner Lorraine O’Neill - mum to Mia who also has CF. Lorraine praised the work of the local branch committee in steering the project in conjunction with the HSE’s Estates department, and the thousands of people who helped raise or donated funds to the cause. “It’s been a long time coming. There has been so much done locally. But, not only have we raised funds, we raised awareness as well of CF. I don’t think there is too many people in the county today who doesn’t know a bit more about CF and I think that’s as important as opening up these rooms - that people are aware that, while a diagnosis is bad, there is still hope, and with these rooms today there’s even more hope.”
 

‘He’s a new child’

One of the biggest rounds of applause of the afternoon for Minister Harris was for the role he played in securing a deal for access to life-saving drug Orkambi for CF patients.
Sheila Smyth, whose son Aaron lives with CF, started the treatment just three months ago, said: “He’s a new child.”
Sheila’s teenage boys stood out in the room filled with dignitaries and doctors dressed in suits. Her eldest boy Gareth was proudly displaying a new tattoo, got against his mother’s initial wishes, but stating: ‘I fight for Cystic Fibrosis’ along with a set of boxing gloves. “How could I stay mad at that?” she beams.
Both brothers compete in the ring and, given his new lease of life, Aaron has recently returned to training. “I’ve started to put on weight, I’m not coughing as much as I used to, it’s going very good. It’s making a big difference. It’s class.”