A Co Monaghan student has made an emotional plea for Government to approve medication that will significantly improve the quality of her life.
21-year-old Aoife Gavin from Castleshane was diagnosed with Friedreich’s Ataxia, a rare inherited degenerative neurological condition affecting mobility, co-ordination, speech, vision, hearing and heart health at the age of just 13.
Aoife who currently uses a walker to help with her mobility said there is no cure for her condition and she will progressively lose her abilities over time.
Skyclarys is the only approved drug for the treatment of Friedreich’s Ataxia in adults and adolescents aged 16 years and older.
Aoife said the drug is not a cure, but if approved in Ireland it will give her time, which is the most important thing.
Aoife said people all over the world are getting this drug and seeing others benefit from it is "heart breaking" to watch from the side lines, especially when she knows this might never be a reality for her.
Since March of this year, Aoife has been part of a campaign group that is trying to get the medication approved in Ireland.
After a meeting in Leinster house last week yet again failed to reach a final decision on whether or not to approve the drug, Aoife warned that time is of the essence.
With the case still under review and the Dail now in recess for the summer, Aoife said she wants the Government to realise that you can't just put a hold on Friedreich’s Ataxia.
Since visiting Leinster House last week, Aoife said her health has already deteriorated, adding that she dreads to think what her condition and mobility will be like come the end of Summer.
Speaking to Northern Sound, Aoife fears that she may be forced to seek treatment for her condition abroad.
Aoife told Northern Sound: "It's so heart-breaking to go through this but to then be faced with constant fear that your life will be shortened and I don't know what it will take for the Government to realise just how serious this disease is.
"Time is of the essence and the Government is being careless with our time. I'm only 21, I shouldn't have to campaign tirelessly for medication that will significantly improve my quality of life.
"I love living in Ireland amongst my family and friends. I don't want to leave them, but if this medication does not get the go-ahead I will be left with no other option but to move abroad because I'm not in a position where I can play about with my health. I can't plan my future, and that has such a toll on my mental health."
