Testing testing.
Testing.
Who are you?
Iziyah.
How old are you?
6 years old.
I’m 16 years old.
Director: Are you 16?
Iziyah: Yeah!
[Fart sound]
[Laughing]
Can you not do that?
No.
Why do you have a cool tube in your nose?
Um, my tube is for medicine.
Why do you need medicine?
So I don’t get sick.
So Iziyah needs medicine for a few different things,
he’s got a lung condition so he is on medicine to help avoid him picking up bugs
a drug called an immune suppressant for a post transplant complication.
Yeah.
What's the next question?
When did you first get sick?
When I was 2 years old.
The first thing was called chronic granulomatous disease and then…
When I had lung issues.
… and then bone marrow transplant happened when he was 2 and a half.
And I got eaten by plants.
What?
It’s called a bone marrow transplant.
Transplant.
Why is it called a bone marrow transplant?
Because it gives you new cells in your body.
Oh!
What’s chronic granulomatous disease?
My body didn’t fight infection pr-properly.
Do you think you’re brave?
Umm, yes.
I get blood tests and I see the doctors.
I always cry when I get a blood test.
Doesn’t matter, still makes you brave.
What do you find really hard?
Um, sometimes I don’t see stuff in front of me because of my vision.
How much can you see?
Only one kilometre.
One kilometre?
Do you mean one metre?
Yeah.
You’ve got tunnel vision aye?
Yeah.
So it’s like you’re looking through a straw.
Yeah.
What do you like about school?
Lunch and morning tea time.
[Laughing]
What about music and sports?
Yeah.
What’s your favourite thing to do?
Go to meet my friend Taylor from the immersion course.
One time we went to the mall and ate a doughnut.
She has low vision too.
She doesn’t ask me questions about why do I have a tube in my nose.
Next!
What do you love about your mum?
Really?
Yes!
Can you answer that for me?
No!
She hugs me goodbye when I go to school and when she says goodnight,
and she reads me stories.
Mum, what advice do you have for mum’s with kids with challenges like Iziyah?
You have to answer questions, chop chop.
I’d say to not turn down any help from people, and to ask as many questions as you need to
because there is no wrong answer.
Iziyah: There’s no wrong answer to a question.
Shhhh.
Where do you get your advice?
Mainly from other parents in a similar situation.
We’ve build quite a strong connection and I have a couple of close friends
who are just my go to.
Do strangers always ask you questions?
Not always.
What do they do?
They stare.
Do you care when people stare?
Yes!
Because why?
I feel weird.
I’d rather that they came and said hi.
Thank you!
I thought that I was gonna let something blow.
Don’t, you can’t, you’re on TV right now.