Aoife Quinn

So it is a neurological condition and it's progressive so at the minute we'll say my balancing coordination is affected but eventually my speech my sight

my hearing will be affected.

So yeah, and like people have died from this.

It's awful.

They say around like 30 to 40, but again, every case is so different.

Like, I'm 23 now, and for the age of me, with this condition, I'm absolutely blessed.

After when I'm still walking, just off balance, my speech is grand, my sight and hearing is grand.

But like that, it's just a matter of time before my body starts to deteriorate.

Everyone is different.

So it's like the nerves and muscles in the body, they're all affected.

There's this protein that's called frotaxin, and it just isn't being produced in my body.

I would say not enough of it is being produced, so causing off-balance and coordination issues.

And so there's drug now at the minute, and prices are being negotiated now.

between the pharmaceutical company, Biogen, and the HSE.

So it's just a matter of time before hopefully it will be reimbursed.

But between now and then, there's people all over the country that are losing their abilities, such as the ability to walk and talk.

So I'm really, really praying that it comes soon so I can keep my ability to walk.

I am, yeah.

Not so much, I don't think, to argue my case, just to really plead with them.

I know there's many TDs on my side and of all patients in the country with Friedrichs.