See their presentation “From Sydenham’s to Kilimanjaro” here.

Transcript

“Do you mind just telling us what the your relapses were like, I mean you, you were obviously very badly affected the first time. Was it as bad the other times?”

 [Callum]
I would say the first time was definitely the worst, it wasn’t to the point where I couldn’t… When I first got diagnosed with Sydenham’s, but it’s just like when you when you think you’re getting better and then that happens, and you’re just deteriorating again, you know you’re so close to getting a full recovery. And then that happened, it was just annoying, the fact that it was so close and then you become not well and then you get better again and then you become not well… you feel like it’s never gonna get better.

And I remember the last relapse I had, I was actually at football and I could kind of tell, it was like my movement started kicking off again and I could feel, because obviously I’ve had it a few times before. I was aware that this was what was happening, I remember going to the car and telling Mum, she wasn’t too happy either, but apart from that last one, there’s not been anything since and that was, you know, near enough ten years ago.

Feeling wise, it was, you’re getting so close, and then You’re not well again….

[Andrew]

I think there was a correlation with weaning him off the Epilim. He would be on a full dose when he was first going through it, and then we would slowly but surely try and work it down. And then the first relapse, it was as if he got to hardly anything and it kicked back in and you do work your way back up. So it was a journey of going up and down and that happened two or three times. And then I think the final one, we weaned him off it and that’s it was fine so.

[Nadine]
And I bet you’ll never forget those feelings, Callum, in your body, when you can feel a relapse coming on.

 [Callum]
I would never have thought it, it kind of hits you with a few weird feeling, which was not nice at all, but I didn’t like Epilim either, that was one thing I hated. It was a cherry taste of the Epilim, and I have still been put off cherry to this day because of it.

[Nadine]
I was going to say, put off cherries for life, bless you!

[Michael]
Callum, it’s really good to hear your story.

I just wondered if you could be honest, which it might be difficult, I won’t take it personally -how did you feel about having to see a psychiatrist as well as all these other people?

 [Callum]
It was quite scary, I remember.

Because I remember we had several people as well, I think at the start it wasn’t good at all, especially Dr Zuberi and yourself. But over time I think you just know that these people are here to help you and you kind of develop a relationship with one another. So at the start I didn’t like it at all because it was horrible. And I remember always hating going in the car to the hospital, especially at the very start when I was young.

Then over time, I think you just get used to it, this is just part of the process to get better on meeting up with Doctor Knight, for example, with the heart and yourself and Dr Zuberi. At the start it was horrible and I wouldn’t like anyone to experience it, but when starting to go through the process, it wasn’t anywhere near so bad.

 [Andrew]
I think it’s probably similar to what we experienced as parents, you just want your child to get better and move on with life. And when Callum started to get his various different recurrences, it then meant, when we started talking to yourself Doctor Morton and Nadine, we thought, “look, we need to do something here!” Because it was as if it weren’t allowed to escape until we kicked off this charity!

So that was the real positive that came out of it, yeah.

[Nadine]
And Michael can be dead scary, can’t he Callum, he gives you lots of homework and it’s really difficult in the room with them. It can be hard.

 [Callum]
No, he was great. He was a great help for me, and same with Dr Zuberi, they were the two I would say made the most impact on me.

[Nadine]
Yeah, they’re fantastic, aren’t they? They’re fantastic. And I think that they give you the information you need to, to create this wonderful story that you’re sharing with us now. So some scary moments in it but definitely some amazing achievements. And I for one can absolutely see you climbing Everest in the future.

 [Callum]
I will, I will 100% climb Everest, I’m saying it now.