My parents were divorced when I was quite young. So I guess my step-father is the one who’s more involved with my son and I think it’s, I mean, it’s been difficult for him. Hes not a very, he doesn’t express his emotions very well but my, my mother was, was very much devastated by, by the diagnosis and I think a lot more than she let on. And, you know, I had a friend who had, who had told me after my mom had died that one day she had come to visit my mother and my mother was in tears because she knew that Andre wasn’t going to live a normal life. And that was very upsetting for me because she would never say that directly to me. But it does, you know, that was quite difficult.

I mean you have to accept the things that you can’t do anything about and that’s, you know, I’ve gotten to a stage where I can do that now. You know, once you get kind of past the anger you just have to accept the way things are, life is unpredictable. And even if we didn’t have this condition in our family you don’t know what’s going to happen from day to day anyway. So I just try to think that every human being has things to deal with, you know, whether it’s health things or emotional things. I mean nobody gets away with a completely easy life and I, I just try to remember that and, you know, cope with it that way. Theres nothing I can do about the uncertainty and so I just, I hope, I hope for the best. And I hope that research brings better treatments and I hope that by the time my son starts having real difficulties that therell be more that they can do.

Really just I mean it’s quite unfortunate, I mean it really is, it’s educating him and I have to tell him that if he does something too strenuous or he gets out of breath, that he is putting himself in danger and I, you know, have told him that, you know, it can lead to you collapsing and dying. And that’s a horrible thing to have to say to a child but if I don’t say that then theres a much higher chance of it happening. So that, that I found, and still find, very difficult.

When did you first tell him about his heart?

I can’t remember the date but hes always known. It’s kind of like hes always known. I tried, I tried my hardest to make it, to put some positive sides to it. You know, I said to him, you know, were all different and it’s, it’s, will probably make your life more difficult but when you have to go through things that you also gain strength and are able to help other people and, you know, it just makes you a better person all round. So far he buys that one.

I think it’s been very hard to cope with as a couple. I mean, I’m also here now talking about it from the point of view of me having, having the condition as well. Because I’ve always kind of said, well, the fact that you don’t know what’s going to happen, that, you know, for example, I’m going to be having surgery. You know, I might die. I don’t know. And I’m, I’m very good at saying things like that, you know, well, you know, Andre could drop dead playing football. You know. I always say things like that because it’s a fact, I know that that can happen. The chances of that happening are not huge at this point but I will say that’s a fact and he will, you know, come back with ‘That won’t happen. You know, ‘I just know, I have a good feeling. You know, I think hes, hes, that’s kind of been our way of coping. And sometimes I actually find that difficult because sometimes I feel that I need him to accept that it’s not wonderful, that it’s not always going to end up perfectly and, you know, it’s just, even when my mother died from this condition ‘Oh shes not going to die, shes going to be fine. And she did. And that was very hard for me because I needed him to, just to accept my feelings and the facts and, you know, he, his way of coping is very different than mine. And that’s hard as a couple. And the only thing I can say is, is just you have to talk through and be honest with each other.

Hes never really had any great issues surrounding the check ups. You know, I guess we try our hardest to not let him know that were nervous or that it’s upsetting for us. We try to make it just kind of like a routine thing and try and make it fun and you know I have two other children who, who also go because they have to be screened as well up until they’re young adults because it can develop at really any, it can develop at any age but it usually develops, you know, in adolescence as I said. So it’s kind of like a family, a big family ordeal. You know, we all go and they get checked and, and then we see the consultant and we just try to, try our hardest to make it fun and not too serious.

I mean it’s very hard, like I change my mind on this all the time actually. I mean, he knows he has it, he knows he has some limitations, sometimes he goes beyond what I think his limitations are and I don’t always, I’m not always very aggressive at I guess preventing him from doing the things that he wants Because I don’t, I want him to be as normal as possible. It’s a very fine line. You know, theres a couple of weeks ago, he loves football. ‘A couple of weeks ago I was thinking ‘Gosh, should he be playing it?’ You know, I spoke to the consultant, you know, the consultant said ‘Well, hell probably be OK. It’s very unlikely that at his age that he, he would drop dead. But I can’t promise you and it does happen occasionally. So, things like that are very difficult. And I’m constantly kind of changing my views and especially working here you see a lot of worse case scenarios because those are the people who really need support. And you do, you do wonder sometimes if you’re not restricting enough or restricting too much.