My name is Ruth. I have been married to Noam Tamir for 32 years. We have three children: two daughters and a son, Jonny. And in January this year, January 6th 2016, Jonny, our youngest, who was 23 years old at the time, donated 61% of his own healthy liver to his father, who has a very rare and very nasty disease called PSC: Primary Sclerosing Cholangitis. I think there are 7,000 cases in Europe, that are recorded, so very rare and incurable. He was in the last stages of liver disease, end stage liver disease. His liver was very sclerotic, and Jonny agreed – volunteered – to be a live living donor.

We’re a kind of very positive family. We’re not a medical family in the sense that we don’t like intervention – we keep away from doctors – we have a very positive outlook. We’re part of a very warm Jewish community and, you know, amazing – that’s what you do, you just get busy looking after people. People don’t ask, they just do it – they just come ‘round with soup and chicken and food and it’s very special.

Noam was very, very close to his feelings. He was crying quite a lot – that’s quite well known – he did feel some guilt about what he’d done to Jonny. But it’s interesting – I mean we’re now nine or ten months past it. It’s our middle daughter Deborah who found it most the difficult to deal with, who felt poorly supported by us, and the shock of her father and brother being so ill I think really, really, really shocked her. And that was unexpected, in a sense. I’ve been fine, I really have; I also got on with my life if I could. I did a little bit of work. I mean I didn’t stop completely, I mean there’s no point.

You read, you go online as we all do, and, you know, it’s major, major surgery. It’s not very common, it has risks we don’t know yet. So then the whole discussion of whether Jonny should do it felt really, really difficult. It wasn’t something we wanted to do at all really. I think the emotional stuff was then, earlier in the process. I think it was then actually, rather than later, once we’d made the decision. I mean all along it was very hard, and then what happened was that in September, we were at our synagogue and Noam fainted. And Jonny was with us, and that kind of made it clear to him what he was going to do.

I’m quite an emotional person but I’m also quite a contained person – I think I didn’t really believe it. Life just sort of overtakes you and I’m not sure I quite appreciated what it was, to be honest. Noam was in denial. Noam thought it shouldn’t happen, and he was going to be fine and that he would wait – he wanted to delay it. Just as he wanted to travel to see his father who was very ill in Israel, and he wouldn’t listen to me when I said you cannot travel it’s too dangerous, so we had to go to see a good gastroenterologist friend of ours, a doctor, who said absolutely not, because the five-hour trip to Israel is – you may bleed – it’s not like you don’t have doctors in Israel, but on the flight you could bleed and die. That got Noam. Then he understood that he’d not be going anywhere. But he wasn’t accepting it really, how serious the situation was, which I know is part of the illness as well.

Jonny didn’t talk about it a lot. My girls, they’re drama queens, they talk a lot. They’re very different. Jonnny’s a very quiet, very private boy – man – deals with it with slightly, sort of underneath it, with anger. And he hated the system, and hated – he’s probably told you – going to the hospital appointments, waiting hours, being messed around. You know, welcome to the NHS. So he kind of dealt with it in a sort of rather quiet, rather angry, sub, sort of under the surface sort of way. But without sort of histrionics, you know, and without blame. You know he had exams to do, and he was – yeah, he didn’t talk about it a lot.