Niamh Ní Hoireabhaird: How much is my life worth to the HSE?

'I’ve lost a lot of my fine motor skills, my eyesight is getting fuzzier, and my speech is slurring a lot more. I would give anything for this drug'

Niamh Ní Hoireabhaird says the treatment options for Friedreich’s ataxia have largely remained the same since it was first described clinically in the 1860s. File picture

In 2009, at the age of 13, I was diagnosed with Friedreich’s ataxia (FA), a rare, progressive neuromuscular condition that results in early death. Not fully comprehending the devastating nature of my diagnosis. 

I remember naively thinking, “Yeah, it’s bad news, but surely they’ll find a cure soon enough.”