The progressive neuro muscular disease causes nerve damage, muscle weakness and mobility loss.
Pressure is mounting on the HSE to approve Skyclarys for people with the rare disease called Friedreich's ataxia.
The progressive neuromuscular disease causes nerve damage, muscle weakness and mobility loss.
Approximately 200 people are affected by the disease in Ireland.
Campaigners are calling for the drug which is shown to slow the symptoms by up to 50pc.
A final decision is to be made by the HSE Leadership Team by August 25th.
Speaking on Kildare Today, Niamh Ní Hoireabhaird, disability activist and journalist from Kildare shared here experiences with the disease:
"For myself and most of the other campaigners, we are just exhausted coming up to the final decision, we're in the final days and in the final push for this drug, and we're still going, but we're very fatigued."
Niamh, who coincidentally turns 30-years-old on the HSE decision day for the drug, also criticised the lack of support she has received throughout her journey with the disease:
"I've had no support, it's really taken it's toll on me, the mental health aspect is just one part of how Friedreich's ataxia can affect people and make their lives much more difficult.
She expressed her dissatisfaction with the Government, who she says are "making our lives hugely difficult".
"Put simply, the Government are making our lives hugely difficult, I know there are so many strings attached and so many people involved but at the end of the day I'd like all the people to come together and for the Government to make the right decision."
"At the end of all of this, I'd love to take some time for myself, but until a drug is within our reach, we can give up this fight."
The full interview can be heard below:
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