Elaine Pollard

the progression and keep what he has now and that's all they want is a chance to live their life and be and live to their what they can do and this drug slows down the progression it has 55% success rate in it and like how many stories do the government need to hear heartbreaking stories from families and FA sufferers out there before they realise that this drug needs to be reimbursed

Well, since Oisín and his friends decided after Christmas, they went to Dáil in February, the five of them, and along with us, supporting them to fight their case and bring their case to the ministers.

And it's great because Frederick's Taxi is so little known about it.

It's great that people get the full understanding of it.

But it brings up

all your emotions again of when he was diagnosed.

Like a little chap of nine years of age being told he has this life-threatening disability or disease and there's no cure.

And now there is not a cure, but a preventive that's going to slow it down, that's going to help Bushina and the rest of the Friedrichstaxia patients.

To live a life, they're entitled to live a life the same as any young person.

And as a parent, that's all you want for your family is to be independent, to live.

And you want to be able to mind him and nurture him.

And it's out of our control.

And it's heartbreaking, like every day looking that he's losing a little bit because it's progressive and it's slowly progressing.

Like he was able to walk, then he used a rollator and then he used a manual chair and then he used an electric wheelchair.

And now his speech is worsening, so we were looking into getting his voice recorded.

But Uisín is a witty, caring young man, fun-loving, loves meeting his friends.

He's great friends, great family support.

And anybody that has met Uisín,

You'd be only too grateful that you've met him or you have him in your life because he's a wonderful young man.

And it's heartbreaking as parents to look at him every day struggling and his determination.