Just like I said in the email really, even if it doesn’t change anything for us, what about later on? Like I say, to be honest, I don’t – I have been on the net and had a look, and there are other families that have found themselves in a position and they’ve proven that there is something, and it has been rare. But nobody’s listened. And they’ve gone through years and years. I just don’t want that to continue. If this really is an answer, even if it takes ten years now because it’s in the beginning, what if in fifteen years it doesn’t, it takes a month? And you could potentially – you could potentially know a treatment, a successful treatment. Or one that’d at least keep it at bay. It’d identify what will and won’t work. Not just the disease itself. Or so they believe that that’ll be in part of it in the end, that they’ll be able to tell what drugs will and won’t work.

Again, the things like insurance, do we have to declare it? And anything like that. Wasn’t from me or dad, it was more for [Daughter] future, because we already can’t get insurance for her. Sort of holiday insurance. So that did concern me a bit. But apparently there is an agreement at the moment that nothing would be declared. Whether that’s just because it is a – like a study, like you say, rather than this is what we actually do in the NHS. That might change in the future. But for now, the need for an answer is greater than what that would actually imply later, especially for anything like that.

So if we go back to – you’ve decided to do it, and you had to travel down to London. Can you describe what happened when you got to London?

There were several like families all already there. You were given, I think it was between like nine and eleven, eleven and one. To break the journey for [Daughter], we went down the night before. So we aimed for the nine to eleven. You basically went into the [research clinic], you were checked in. Signed a few forms. I will have the copies. And you literally sort of waited your turn to, to go in and have the blood taken. And then you, you saw [Doctor]. Yeah.

What happened in that appointment and after then?

Just discussed, you know, saying “Before we send the samples off, this is what we hope it’ll be. What did you think?” You know, “What are you – basically, what are you expecting?” And the information that come through did say, you know, you will get something back. But like I say, of course we want that. We want the feedback. But we also knew that it’s not been done before, so there were every chance that actually we might not get anything.

Just discussed, you know, saying “Before we send the samples off, this is what we hope it’ll be. What did you think?” You know, “What are you – basically, what are you expecting?” And the information that come through did say, you know, you will get something back. But like I say, of course we want that. We want the feedback. But we also knew that it’s not been done before, so there were every chance that actually we might not get anything.

do you have sort of like any anticipation that the genomes, the sort of sequencing of the genomes will help, particularly?

Do I have my hopes pinned on it? Is that what you mean, or? Do I think

Do you hope at all?

I suppose as time’s gone on – I did initially when we joined it think that they’ll find something on the DNA, and they’ll recognise it and they’ll say “This is what it is, and this is what’ll happen.” But we’re not hearing anything, and seeing things change for [daughter], I now do have a reservation that if they do find it and say “Well we don’t actually know what this is, and we’re just going to have to wait and see.” I won’t wish I didn’t – I won’t wish that I shouldn’t have done it or anything. But I think I probably will think maybe not knowing was better.