Jasper’s Story

Jasper: I probably first found out the severity of it maybe when I was five, five or six, about when I first found out like I could not be here.

Peter: Yeah it was probably more when he first started school, like, because we had to do obviously all the paperwork you’ve got to list medications and conditions and things like that.

Jasper: Well, my name’s Jasper, I have Alagille Syndrome. I do like drawing, I do little drawings of like military planes. After seeing Top Gun when I was little. I think after I saw the movie, I was like I want to be a pilot. I would like to be studying for my pilot’s licence. I love watching little documentaries on how they built the planes, how you become a pilot. Yeah, I want to give it a go.

Peter: He was a bit yellow at the time and we just came down here for a visit to see grandparents. We thought, oh it’s only three months, it’ll,  jaundice usually goes away. We were told it would probably go away as well, but we took him for a, like, just a ride in the stroller and we went over a bit of bumpy road and he got a bruise on his arm and his arm started to swell.

The day of the diagnosis, it was quiet, we went in, saw the doctor, he sat us both down and he said your child has this, it’s classed as chronic organ failure. And obviously just felt wiped out inside. So it definitely brought his mum to tears and I was sort of sitting in stunned silence. As soon as you hear that news you’re on the floor. Obviously, you don’t know what to do next and what’s going to happen, but the doctors, the good support team, they just said yeah well this is what we got to do, this is what we can do to manage it.

I got posted down here to Puckapunyal and then after my time there I was going to be posted to either back to Darwin or Adelaide, but we thought, well, Jasper’s specialist in the hospital’s here and he’s got two younger brothers ,so we thought oh I’ll get out of the army and we’ll stay down here.

Alagilles being, well, what it is, so his liver’s not getting rid of bile acids, so which also means it comes out through his skin so a lot of scratching.

Jasper: Yeah, I remember I had one really bad night, I could not stop scratching, there was blood blisters all over my legs and arms, lots of hospital visits.

Peter: Lots and lots of blood tests.

Jasper: Well, lots of medicines.

Peter: Yes because as he grows, obviously his medications change and dosages and things like that.

Jasper: I’d get told like we’re going to up the dosage because like something might be too low or too high. It’s constantly just trying to get everything right so I’m like not too high or not too low, or else I could get very sick.

Peter: Like mixing a cake.

Choosing schools was a big thing, teachers were all good they all loved him and took care of him. Then we also had a handy little booklet that says I’ve got this that they could hand out to the kids, but it was all written for kids as well. Sport was another thing. He can’t really do contact sport because his liver and spleen’s enlarged, so a decent hit like playing football or anything like that could get a bit interesting. So cricket’s been his chosen sport now.

Jasper: When I like knew dad was in the army I wanted to be in the army as an infantry man, but I found out I couldn’t do that because of my condition, so then I had to find something else to do and I saw I found cricket.

Peter: Possible outcome will be liver transplant. There’s always a thought, yeah, we might have to have the surgery, what are we going to do then?

Jasper: Yeah the liver transplant is a bit scary knowing that it is a very close thing that could happen. But I’d rather do it after schooling, so I’m not stuck at home trying to catch up.

One of my mates he’s well aware what could happen, yeah. We can both bounce things off each other, like what’s going on in his life, what’s going on in mine but, yeah, it’s good friendship support.

Everyone’s journey is different like mine can be completely different to someone else like they might have something else from me. But what I would say is just don’t worry about it that much.

Interviewer: How do you feel about that dad?

Peter: Oh I’d agree, I’d agree, I’d say don’t listen to Google either.

Jasper: Well, when I was first diagnosed, like, I was itching pretty bad but now since I’m on my medicine, way better.

Peter: Yeah, now look at him.

Jasper: I always take the doctor’s advice seriously, like, listening to my doctors, listening to my parents.

Peter: That’s a new one.

Jasper: I listened when I was younger.

Peter: Yeah, okay, I agree with that, he was better when he was little. Teenagers are stubborn.