Kilkenny Woman Advocates for Access to Life-Changing Drug

A young woman from Kilkenny is advocating for access to a groundbreaking medication that could significantly improve the lives of those suffering from a rare degenerative neurological disease. Emily Felix, a trainee solicitor from Gowran, is urging the Irish government to secure funding for the drug, Skyclarys, which is the first approved treatment for Friedreich’s Ataxia. This condition, which affects the nervous system, has impacted Emily since her diagnosis in September 2010 at the age of 12.

Emily’s journey began when her family noticed troubling signs, such as poor balance and difficulty running. Initially dismissed as clumsiness, these symptoms were later identified as the result of Friedreich’s Ataxia, a rare disorder that leads to progressive damage to the nervous system. Over the past sixteen years, Emily has adapted her life around the challenges posed by the illness, which has become a constant presence in her daily routine.

Now, as new hope emerges, Emily and her supporters are calling for the government to provide essential funding for Skyclarys, developed in 2023. This medication is believed to slow the progression of the disease, offering a lifeline to those affected. “I know it’s not a cure and it won’t reverse all the damage that has been done, but it will pause the deterioration,” Emily explained to Kilkenny Live. She emphasized how critical this treatment is for maintaining her quality of life and independence.

Emily’s commitment to her health is evident in her regular gym visits and physical training. Yet, despite her efforts, she expresses frustration at the inevitable decline caused by her condition. “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,” she added.

The emotional toll of living with Friedreich’s Ataxia is profound. Emily noted, “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.” Her sister, Anna Felix, echoed this sentiment, highlighting the need for increased awareness and support for those with rare diseases.

“Actions will speak louder than words,” Emily concluded, reflecting on a recent productive meeting with politicians in Leinster House. She and other campaigners hope their advocacy will lead to meaningful change. Currently, approximately 200 individuals in Ireland live with Friedreich’s Ataxia, a statistic Emily believes should drive the importance of making this new drug accessible.

Despite the rarity of the condition, Anna emphasized that this should not diminish its significance. “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,” she stated. Their call for support from the community underlines the critical nature of this issue for families affected by the disease.

As the campaign for Skyclarys continues, Emily’s determination serves as a reminder of the resilience found in those facing difficult challenges. Her story highlights not only the need for treatment but also the power of advocacy in bringing attention to rare diseases and the individuals they affect.