'It's a lifeline' - Kilkenny woman fights for access to a new gamechanger drug

A Kilkenny woman living with a rare degenerative neurological disease has urged the government to make the first approved treatment for the condition available to her and others impacted across the country.

Emily Felix, a trainee solicitor from Gowran, was first diagnosed with the largely unheard-of Friedreich’s Ataxia in September 2010 at just 12 years of age, a diagnosis that would change her life forever.

Before her diagnosis, Emily’s family had been concerned about many worrying trends, poor balance and difficulty running. What was initially dismissed as clumsiness later emerged as the little-known medical condition, a rare neurodegenerative disorder which causes progressive damage to the nervous system.

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Sixteen years on, the illness has become part of Emily’s everyday life. From adapting her routine to managing increasing physical challenges, she has learned to live with the reality of the condition.

Now, however, she and other campaigners believe there is reason for hope and are calling on the government to provide critical funding for the drug, Skyclarys, a drug first developed in 2023 which is believed to slow down the progression of the condition.

"I know it’s not a cure and it won’t reverse all the damage that has been done and all the abilities I had, but it will pause the deterioration where it is so that I can have a future and I can maintain what I have,” Emily told Kilkenny Live.

"I work very hard to preserve the strength that I have. I go to the gym twice a week, and I work very hard physically to maintain what I have, but at the moment, I’m doing this in vain. As much as I do, my ability is lost either way. So it would be great to have a treatment which would allow me to continue living a life that I can live independently, travel the world, work full-time and continue to study to become a solicitor," Emily continued.

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"Also it removes that fear of the future. It removes the overwhelming fear of not knowing month to month, year to year, what abilities I’m going to lose. It’s a lifeline. It’s not a cure, but it’s the next best thing. I don’t think the people making these decisions realise." she explained.

Approximately, 200 people live with Friedreich’s ataxia in Ireland presently, a stat Emily believes shouldn’t diminish the importance of importing this new drug, arguing people with the illness should not be condemned to a life as a ‘vulnerable minority’.

Sister Anna believes that the rarity of the condition should not overshadow its significance.

"The importance of awareness and support cannot be understated. We live in a system that responds to numbers and groups that can shout the loudest. This means we are pushed to the sidelines as there are fewer patients and fewer voices in the room. We are calling on our community for support," Anna said.

"Actions will speak louder than words," Emily concluded, revealing she and other campaigners had a productive meeting with TDs in Leinster House last week.

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