From Sydenham’s to Kilimanjaro

One family’s experience of Sydenham’s chorea – and where it has taken them since.

Transcript

[Andrew]

Good morning, everyone. We felt it would be quite nice for other parents and children that are potentially going through Sydenham’s Chorea at the moment or recently went through it to just share Callum’s experiences.

So we’ve titled this from Sydenham’s to Kilimanjaro.

So that was just a nice little inspirational picture with the theme of mountains that we’re gonna talk about today. And it just basically symbolizes challenges and life.

We set the charity up in 22nd November 2016, with the mission to be a global source of online information and help parents and children that are affected by Sydenham’s Chorea.

And with the help of many friends and family, we’ve raised significant sums through various different events over the years. And we’ve also worked with the medical profession looking at various different types of surveillance research because we’re all very keen to learn as much as we can, because we all agree it’s a rare disease and we want to get a cure eventually.

I’m also a founding trustee of the charity and back in 2016, and was the chair at the very beginning until Adrian came on board. And we all feel that was a fantastic addition because he’s obviously got the medical professional  experience, but he also had experience with [his son] Reuben.

So I’m 54. I’m Callum’s Dad and live in Glasgow with wife Samantha and Sam is the treasurer and also one of the founding trustees of the Sydenham’s Chorea association.

[Callum]

So hi everyone. I’m Callum Samuel and I’m 19 years old. Currently I’m at University of Strathclyde, so that’s me just going into my second year.

I was diagnosed with symptoms when I was seven.

So  I was obviously very young at the point in time when I was diagnosed, in 2010 there wasn’t a lot of information for young people or for families.

I’ve been quite active for all my life, I still play football weekly and at the weekends with my local team, Busby and the theme of this PowerPoint is mountains so just added that in at the bottom. I love to climb mountains.

[Andrew]

So I’m just going to take some time to share my experience and basically tell our family story, looking back at Sydenham’s, during Sydenham’s – there was a three month intense period similar to what Reuben went through – and then a brief discussion of after, there were various recurrences also. But the overall goal today from Callum’s and my perspective is to give parents and children who are currently going through some hope and inspiration, that it might be a terrible experience right now, but it will get better.

So as I say, we’ve used this challenge of symbolism or mountains and overcoming personal challenges, and there is no doubt that that three month period was exceedingly challenging for me as a father.

But the overall goal is that the future will be bright and it’s full of opportunity and Callum is good testimony for that.

Callum was born April, 2003. It was a very normal childhood. And we can only think of 1 instance when he was ill in his life up to that point. It was when he was about six months old. And I must admit, it was a very kind of harrowing experience for Sam and I, but we had no idea what it was. And he seemed to bounce back fairly quick. But at the time, we were very worried. And I’ll come back on to that later.

Calum had lots of friends and family around him growing up, and as he said, he loved nothing more than playing football. We were very fortunate, where we lived at the time that there were lots of kids growing about us all at the same age. So you know, his childhood was idyllic for him, he loved it and as Callum says he now plays amateur football.

I got into hill walking in 2009. Purely as a way of getting fit and it’s quite late in life doing that. Callum watched that happening and said he’d like to do it too.

The date I will always remember, it was Sunday the 13th of June. It was a seven mile hike. It took him five hours on his wee legs, but he did it.

Just recently he did it in 2 1/2 hours, so that’s a big difference.

So that was really a point in life we thought, well, there you go. There’s a boy that’s very, very fit.

And then we went on holiday at the end of that month. He started to become unwell and it was quite distressing. We took him to a doctor on holiday and the doctor diagnosed tonsillitis. So we thought well that’s fairly common. He took some antibiotics and then everything should be fine.

But it dragged on a little bit longer than we liked so when we came back from holiday we took Callum to the Victoria Hospital in Glasgow and they again confirmed it as tonsillitis. And gave more antibiotics.

So then a couple of weeks passed, by this time it’s now sort of mid-July and we took Callum and his sister and a couple of Callum’s cousins to bowling and a local place  to get a bite to eat. Everything is great and we notice that Callum just fell over really, really awkwardly and we couldn’t understand what it was. And I could tell by looking at Callum’s face that he was as shocked as us, but he bounced back up.

Then on Saturday 24th of July 2010, Callum came into Sam and my room.  And he was talking away to us, and he thought he was talking absolutely normally, but it was complete gobbledygook. There was nothing coherent at all.

So we were exceedingly anxious and took him straight into Yorkhill Hospital and Glasgow.

Thankfully, we were quite lucky that Yorkhill is only about 6 miles from our house. It’s one of the main children’s hospitals in Scotland. It was absolutely mobbed, the whole place, you know, as you can imagine, Saturday, full of lots of kids, various different things happening.

The emergency department ran a triage and very quickly Callum was taken and I remember saying, I don’t know if that’s a good thing or a bad thing, but either way he’s getting the attention that he needs.

And you know that was probably a good thing that we were in Yorkhill and we’ve experienced that from talking to other parents in the past where it took them a long time to get the actual diagnosis because Yorkhill had experienced two or three other cases fairly recently, they were quite confident that this was what this was. So they took blood tests. Various tests and kept him overnight.

We then had to come back into the hospital on the Wednesday.

And it was a doctor Beattie, If I remember? And this doctor was excellent talking to you, Callum, he explained what was going on. So at that point the test results had shown that you had a strep A infection that had led to rheumatic fever.
Keep me right, if I’m doing this in the right order, then that obviously as a by product had caused this sort of brain injury, with this Sydenham’s Chorea – and you can imagine as his parents going wow, what is going on here?

So then they came out with, “we would like you also to see cardiology” and I thought “wait a minute… We’re talking about the brain, now we’re on to the heart?”. And yeah, they said this is a complication of rheumatic fever. So very quickly you got all the heart tests by Doctor Knight. And it was found that Callum had two leaking valves, causing regurgitation.

So you know we went from a healthy boy a number of weeks ago to a young lad with a brain injury and heart damage.

So we were completely shell shocked, didn’t know what was happening. Callum then started to have complications with behaviour and various different things started to happen, at that point the decline was quite rapid and I say that was the kind of four weeks where he couldn’t, like Reuben, walk, talk, eat, we were trying to take him in and out of hospital. Travelling was becoming a real challenge and Callum was getting very upset, very emotional. So he ended up being taken into hospital.  I think he was in for about four to six weeks.

So we were basically watching this fit young lad just deteriorate in front of our eyes.

You got on autopilot, it was all a bit of a blur.

But then we started to see all the specialists. That was unbelievable. It was a full team, so you were very confident that everybody was on this. Dr McLeod and Dr Zuberi explained to us that  Sydenham’s Chorea is caused by a brain injury, in the basal ganglia.  This was all news to us.

But they described it to me as a little motor going on in the brain and instead of switching off when it should switch off, it’s continually going and that’s causing the involuntary movements which you see in Sydenham’s Chorea.

So, “Oh my goodness!” So then what I do remember at that point was he said, look, this is one of the few brain injuries that you can make a full recovery from. So that was all I wanted to hear.

And at that point, it was just a matter of time and so we constantly reassured Callum, that this was going to be alright, positivity is a really good thing for him. He just needs to feel that he is gonna be OK.

And eventually we started to see some shoots of recovery appearing. Probably the greatest thing I’ve seen was when you started to walk again.

And then in really quite a short period of time, one or two weeks, you were out of the wheelchair.  Callum tells the story about Silverburn shopping centre, and then on the 13th of September he even took me to Ibrox [stadium] to see Rangers [football team] which he loved.

And then that was really the end of that three month challenging period.

And then it went on to the next page, which is like obviously life after Sydenham’s  And I believe you had 3 or 4 recurrences. So it probably started from about 2010 to 2012, 2013 at the latest, and they did say it at the time when we were asking about it, that “we don’t really know. We can’t say for every child, but we are confident that in a couple of years everything will be great”.

And that was the case. He took sodium valproate (Epilim). And I think that helped with the basal ganglia, trying to slow things down.

And then as recurrences happened, it went back up, and we were on and off the Epilim’

[Callum]

The Epilim wasn’t good either. Didn’t like that. No, I didn’t like that.

[Andrew]
So I I think yeah, he put on a little bit of weight as well,

[Callum]

I was eating a lot more at that point as well. Yeah, it wasn’t just the Epilim.

[Andrew]
During that period one of the doctors did say, ‘Look we are very confident that Callum must have had a streptoccocal infection before.  And that’s what I’m coming back to, at the start of my chat where you know, when he was a baby, and it’s the only thing that we can think of.

But, but we don’t really know obviously, but that’s the only time in his life I think he was ill.

Yeah, it was a tough three months, but as I say the purpose of this is to sort of show that this young man is completely healthy, very, very good. He’s getting on with life, school had challenges, but he dealt with it and has shown that he could get to university and is doing really well. So the future is bright and you know, hopefully it’s gonna help other kids know that there’s still lots of opportunities out there.

[Callum]

So I was diagnosed with symptoms when I was seven years old.

At the time, hearing my Dad talk about it, I don’t remember a lot from those 3 months, What I do remember is going through the motions, getting to the next day.  Most of my experience from the tough, tough three months was all sort of positive things as well and it’s just funny how the brain works when you’re going through the worst moment of your life and you can just think of the positive side to it as well, which I think in the long run, definitely helped me, I would say, the fact that no negativity was in my brain. So you just keep going forward.

So for me as such a young boy I didn’t really understand how severe the situation was, ‘cos you just think it’s another illness, you don’t realize that you’re gonna end up spending a month and a bit in hospital and then years after recovering. But I remember waking up in the hospital bed one day and overhearing my mum and dad talking to the doctor about penicillin, that I’ll be on it until I’m 21.
Funny thing is, that actually happened so. You never know what will happen in life, at that time it hit me like a ton of bricks because then I remember sitting on my bed crying my eyes out, the fact that you had to have that your whole life.

So over time my condition did get worse, it left me unable to walk, talk, eat, cycle, swim. You had to learn all the basic functions of life again, as a  young boy, that was really difficult especially the fact that from being such a young, healthy lad to not being able to do anything was not ideal, to say the least, but like I said, I don’t remember the day-to-day struggles just because it was never in my mind to think about all the negative stuff. You gotta give a lot of praise to my mum and Dad because as a young lad, that’s all you want, if my dad was in my ear saying how terrible this is, that’s all you’re gonna think about as a young guy.

But later on, after hearing all the stories, from not even just mum and dad, but other families as well, it was quite unimaginable how brutal and severe this was.

But I I always try to find the positive and enjoyable things to do in life and at this moment in time , I’m really happy going to university and have loads of things going as well.

But I always remember this nurse, don’t think he will ever leave my brain, he was called Donald and he left a great impact on my life. He had a positive attitude about everything and every time I saw him he lifted the room, which is good.

When I was starting to recover and get a wee bit better, I do remember the hospital toast, to this day, I probably ate about 20 loaves a day when I was in the hospital when I was getting better, but I always looked forward, they must have put some other stuff in that butter, because that was something, amazing.

Another thing at Yorkhill Hospital was the sensory room, it was this sort of playroom for children,
because obviously at that point I couldn’t walk, it was padded, there were different toys and stuff, it made the day a bit better when you can go up there – I remember it was on the 7^th  floor at the very back of the ward. It was really good, it made the time not as bad. Especially when you’re going through a tough time.

[Andrew]

You couldn’t kick a ball, so you became the goalie, didn’t you?

[Callum]

I remember that, also the sensory room, from the window you could see Ibrox stadium, the home of Rangers,  which,  as a lifetime Rangers fan, that was a bonus.

So I’m just going to talk about my recovery. So throughout my recovery, I always believed that one day I would get better, even at the toughest moments where I couldn’t walk, talk, eat without the help of someone else. I always just had the faith that one day, even if it’s tough right now, it will get better.

Uh, one thing I do admire, was every day I was lucky to have my family and friends, every day there was always another family member sitting there, my cousins, for example, my aunts and uncles, and obviously mum, dad and my sister. So yeah, that was a good thing, definitely helped me keep going through the tough times, not even just in hospital after hospital as well, and post Sydenham’s, so that was definitely a good thing.

I stayed in hospital for two months, then being in and out the hospital cause you always had appointments in primary school and even high school as well. When you always had to go see the  heart doctor, or Dr Morton, or Dr Zuberi, obviously it’s got to be done, in the end, and it worked out for me.

So this is the wheelchair story my dad mentioned earlier, because at this point I was in the wheelchair and we went to Silverburn shopping centre in Glasgow and I don’t know if something must have switched in me and I just got out of the wheelchair, stood up and then started pushing my own wheelchair. So I think everyone at that point, myself, thought I was gonna be OK and everything would be alright.

So now I’m 19, I’m the fittest I’ve ever been. I’ve always been active in my life, and even after getting Sydenham’s, the doctors always love the fact that I was so active doing stuff because they said that that that definitely helped overcome the difficult obstacles. When you are fit and healthy, you’re always active and out and about.

And when you look back to when I was seven and not being able to walk, talk, I have come a long way and I’m proud of the fact that I have went through this and ended up better for it. So what I’m trying to say, there’s always hope and light at the end of the tunnel, for all the families and stuff as well.

And last slide, what life is like today. So life is very good, I’ll be honest, I’m a very sociable, outgoing person. I play regular football and I go to the gym lifting weights, four, five times a week and also climb mountains when possible which in Scotland isn’t a whole deal of time.  You only get about six months a year to climb mountains, but I love it. So staying active and fit my whole life definitely helped me in my recovery and like I said before I’m in second year of University of Strathclyde, studying business. So really enjoying that as well.

Throughout school I did struggle at times but I was lucky that the schools I went to gave me some additional support and that definitely helped me get into university. I got extra time in exams and because of my movements I got rest periods, which meant that when other people had to write non stop, I could stop for a few minutes, they stopped my time for a few minutes which was a massive help for me.

I have a girlfriend of four years called Josie, and she’s been brilliant as well and I told her about being unwell, for her it was obviously difficult to understand because when you look at me now, it’s like a completely different person.

And I’ve got a great set of mates, who were always there and just the best.

So this was Ben Nevis, me and my dad, and a few of my mates,  Allan, Martin, Callum, we climbed Ben Nevis in 2012, which was two years after Sydenham’s, which is quite surreal when you think of it. And at this time it was a big, momentous achievement for both me and my dad.

For people Ben Nevis is the highest mountain in the UK, standing at 4411 feet, I think that’s 1300 metres, and takes roughly about 6 hours to climb if you are not a complete beginner, but for us, I think it was about 7 hours when we climbed it.

[Andrew]

I thought you’d never do it again. But you know, you came bouncing back. 

[Callum]

These are some photos from when me, my dad did Machu Picchu in Peru. It was the Inca Trail, which was an amazing experience. This was, I think it was it was 2017, so seven years after it all happened. It was a great, great experience and I remember, getting to the very top, we just done a four day trek and when we got to Machu Picchu, the clouds were about, so you couldn’t even get a great photo, which wasn’t ideal, but it was a great, great experience and the bottom left photo is me and a llama.

[Andrew]

What we were going to do, what we are gonna come to in a minute, during COVID, obviously we couldn’t do. So that trip was cancelled. So what we decided to do is we would then, we had the time allocated, we would then do something in Scotland, because you were able to move about. So we thought well let’s do something pretty serious. So we decided we would climb the 11 mountains in Skye, in four days.

These are quite serious mountains, so we had a guide as well, which was definitely wise. It wasn’t normal hill climbing as you can see from the picture at the top right, that’s what they call the Inaccessible peak. So we were all roped up and it’s the hardest Munro [3000 foot peak] in the whole of Scotland.

[Callum]

Hardest peak in the whole of the UK.

[Andrew]

Hey so it was a great experience. Adrenaline kicked in and got us up. I vowed never to do that again, but it was a fantastic experience and we had four great days and Skye is a brilliant place. So we kind of got the bug for the adventures.

As I say, we were hoping to do this a couple of years back. So we’re gonna be doing it this summer.

Kilimanjaro, everybody’s hear od, because the Comic relief team did it, and we’re doing it actually with that group as well. So it’s actually the highest freestanding mountain in the world, because obviously Everest and the like, in the Himalayas, is part of therange. So this will be a big challenge. The big challenge of it is the altitude. What we experienced in Perus, we did see it, what altitude can do? You know, Callum woke up in the middle of night. He was gasping for breath.

So we’re gonna do this with an organized company as well, and we’ll do it at the right pace. So that’s our big adventure and challenge for this year.

[Callum]

And when you also compare that to the average Munro in Scotland which stands around 1000 metres. This is five or even six times the size of a Munro in Scotland, so  I’m absolutely buzzing for it. I’ve been looking into it – I don’t think my dad’s been looking into it as much as me – but there’s about 6 different sub biomes climbing Kilimanjaro, so, I’m just buzzing for it. 

So this is this is my long term life goal, which is to climb Mount Everest, which obviously is the world’s highest and definitely one of the hardest, there’s maybe another, K2, in Pakistan… So I’ve always been interested in and enjoyed outdoor challenges and adventures and looking forward to do Kilimanjaro this year.

But looking into it, there are only 6000 people who have successfully climbed to the summit of Everest. That’s an exclusive club and hopefully one day I’ll be at the top of that, with my Rangers top.

So I want to inspire everyone, even when you have a sort of tough time and you don’t know When it will ever end or if it will get better, there are always difficult times, but you always bounce back from it.

I don’t know if anyone else, even remotely, would want to climb Mount Everest with Sydenham’s  but my goal is to be the first person to climb Mount Everest with Sydenham’s.

Thanks so much.

[Andrew]
Thanks everyone. I don’t think I’ll be joining him on that one.