Navan mother rejoices in 2018 as six-year-old daughter gets go ahead for ground-breaking new Cystic Fibrosis drug

A young Meath mum is looking forward to 2018 as she has been approved to get a hard-fought for, life-saving Cystic Fibrosis drug for her daughter.

Ciara O'Hare (33), from Navan, was told just a month ago that her six-year-old daughter, Sadhbh, would receive the recently approved, ground-breaking Orkambi drug in the coming weeks.

Just over a year ago, Ciara and her family were among huge crowds who gathered outside the Dail (Irish parliament) to call on the Health Service Executive to make the revolutionary new treatment available in Ireland.

After battling infections for several years, little Sadhbh was just one stone in weight when she was eventually diagnosed with Cystic Fibrosis, just after her fourth birthday.

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Mum Ciara must be vigilant on a daily basis to stop Sadhbh picking up even simple infections which could land her in hospital.

Just before being told about being approved for Orkambi, little Sadhbh was diagnosed with a growth of bacteria on her lungs which needed immediate treatment.

"It was great news to get because we were after getting a bit of bad news about a growth on her lungs," said Ciara.

"It was even better news because we had stood outside that Dail so many times, fighting for something I believed in - which was my daughter."

The drug, produced by pharmaceutical company Vertex, has been found to have a life-changing impact on some patients living with CF, slowing the progression of the disease and improving quality of life.

Sadhbh holding a pic of herself when campaigning in the Dail. (Via: Kieran Maguire)

Sadhbh holding a pic of herself when campaigning in the Dail. (Via: Kieran Maguire)

However, drug's approval was initially stalled because of its high costs of up to €160,000 per patient annually.

"A price shouldn't be put on a child's life.  I would fight tooth and nail for anything to improve Sadhbh's life," said Ciara.

"The GPs, Emergency Departments and Docs-on-call were her second home for so many years with coughs, colds and so many lung infections.  She also lost weight rapidly, which really worried us.

"Because there was no history of CF in the family, she wasn't tested for it until late in the day and the late diagnosis means that she has already developed long-term lung damage.

"She's doing so much better now since she was diagnosed but every day is different.  You don't know what to expect tomorrow.

"It's like being a sitting duck - you can never say that things are going good.  At least now Orkambi is something to look forward to.  The experts say that it's a miracle life-saving drug so lets just hope they're right.

"Initially I think it was only approved for people over 12 who suffer from CF.  I'm not sure when it was approved for those younger, but we are delighted with the news.

"Sadhbh is such a happy child and never complains.  We don't tell her too much as we don't want her worrying or thinking too much about CF but we just take it as it comes and deal with it then.

"The one positive thing is that kids love coming to Sadhbh's home on play dates as she has to eat loads of fat to keep her weight up so there's always sweets and a half pound of butter in the creamed potatoes," she laughed.

"As CF has a short life-expectancy, I used to worry a lot about Sadhbh dying young but science is great and everyday has a new medical breakthrough - hopefully Orkambi this year will be Sadhbh's new lease of life."

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Ciara and Sadhbh O'Hare, fighting for the right to a future.Seamus Farrelly