Elaine Pollard

Yeah, it was like Craig's story is such heartbreaking.

And I just wanted to offer my sympathies to Craig and his family and the loss of his son.

And that no family should have to go through that.

And we're living it as it is.

Our son, Oisín, he's 26 now, going to 27 in October, was diagnosed when he was just coming up to nine years of age with Friedrich's ataxia.

And how is he doing now?

As we say, he's had good days and bad days.

He's doing good.

Unfortunately, he uses a power chair to get around.

His mobility has decreased.

He has slurred speech.

He has scoliosis.

He was diagnosed, when he was diagnosed with Frederick's Taxi, he was diagnosed with the cardiomyopathy, a heart condition.

And then about two years after that, he had to get fitted with an ICD, an internal defibrillator, to keep his heart at a regular beat and that.

And the year before he got it done, he had to carry drugs.

a defibrillator it's everywhere we went just in case that he went into cardiac arrest and that but he's trying he's doing his best he's went to school college working part time and trying to keep going and keep his strength and independence and

as much as he can with the support of people around him and he's great support around him and he's a very determined young chap.

Yes, it is shown that in the studies and people that have been on it in the EU and America, we followed it from 23.

And then at Christmas in 24, when it was released in Europe, we thought that, great, this is now hopefully that we have something for us and us and has something to hope for.

And we know it's not a cure, but it would slow down.