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Omagh family considering moving to Republic to avail of CF wonder drug

Thursday, 31 August 2017

Omagh family considering moving to Republic to avail of CF wonder drug thumbnailZona Armstrong and her mother, Ayrin, from Birchwood Avenue, Omagh. Zona has been battling Cystic Fibrosis (CF) from birth and the family is now considering moving to the Republic of Ireland to avail of treatment.

THE ongoing struggle by an Omagh family to obtain a 'wonder drug' to help their 10-year-old daughter fight Cystic Fibrosis (CF) could force them to serious think about relocating to the Republic of Ireland.

And it has also led to Ayrin Armstrong, from Birchwood Avenue, to blame the ongoing political stalemate while her daughter, Zona - and many others across Northern Ireland - are living under threat from the deadly disease.

Ayrin said: "Zona was reading about CF during the summer and saw the life expectancy and she came to us and said that it isn't very old. It was very difficult. We had to sit her down and talk to her about her condition and what it means, but at the same time I was able to say to her that it is a very exciting time because of Orkambi.

"The only thing is Zona can't have Orkambi until her lungs are at 40% capacity, by which time they will have suffered irreparable damage.

"Our only option at the moment would be to move to the Republic, where Orkambi is available."

Ayrin added: "It is a lot for a little girl to live with. She is missing out on so much and having to fight so hard and grow up so fast."

The mum-of-three is backing a campaign to make Orkambi available to CF patients here and has called on the parties to return to work at Stormont.

 

"It's heartbreaking. If Stormont was up and running they could make the decision to make Orkambi available here and that's why what is going on at the moment is so frustrating," she said. I am not just making a plea to the politicians as a mother, but as someone who knows the drug would help hundreds of people living with CF right now.

"It breaks my heart that there are people whose lives depend upon Orkambi, people are dying now. The damage is happening now and we won't stop fighting until Orkambi is available here. Our politicians have the power to make Orkambi available here, but they aren't even talking at the moment.

"It makes you wonder what they would do if it was their child that they were watching struggle to breathe and spending so much time in and out of hospital."

Orkambi has been hailed a lifesaving treatment that has the potential to improve the condition of CF sufferers across Northern Ireland.

However, it has been deemed too expensive by NICE - the body that decides what drugs should be available on the NHS - so it is not routinely available here.

Ayrin (29) discovered daughter Zona had CF when she was just six weeks old after it was picked up through routine screening tests done on newborn babies. CF is a genetic condition that affects the lungs and digestive system, and half of the people with the condition who died last year were aged under 30. Symptoms include a persistent cough, wheezing, shortness of breath, repeated chest infections and malnutrition. Orkambi is the only therapy that tackles the underlying cause of CF.

A spokeswoman for the Department of Health said that without NICE approval Orkambi will not be made routinely available to Cystic Fibrosis patients here.

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