At 29 most young people are looking forward to building a life and settling down, but for Niamh Ni Hoireabhaird this takes a bit of adjustment. She is newly married, but is living with Friedreich’s ataxia which is a rare and progressive neuromuscular condition which is beginning to deteriorate.

Niamh was hoping that a new drug which could potentially help her condition and improve her life would be made available, but because this isn’t deemed cost-effective those hopes were dashed last month.  

In a statement, The National Centre for Pharmacoeconomics confirmed that a HSE reimbursement decision has not been made as it is currently in the drug approval process.  

Niamh Joined Sean to discuss her condition and how access to the drug may help her.