The fight for Otis

Here we go, here’s number two, good boy.
One..good stuff, two
Yeah, good boy!
Well done! Good work Otsie
What that looks like is potentially decades added to
what at the moment is a life expectancy of 37 years.
There’s this amazing medication called Kalydeco which will effectively switch it off
It’ll switch off his CF. That’s how it was explained to us.
The next sentence he explained that it’s amazing
but it’s not available in New Zealand.
It’s not funded and if you were to buy it, it’s going to cost you $360,000 a year.
So we were like on high, and then on a low.
We don’t know where it’s ranked on that list, we don’t know what else is on that list,
we don’t know how long the list is.
The fact that it’s on the list doesn’t actually
mean that it will be funded anytime soon.
We can take the blanket assumption that it will be funded, but it could be anywhere from
10 days to 10 years.
This next process, make it more transparent so we know what’s going on
so we can plan our life and just be aware of where it’s at
because, we don’t know what’s going on.
After that he will go straight into physio percussion
for 20 minutes, where we really turn him on different positions
and kind of tap his back and his side to help loosen mucus.
He’s not quite old enough to cough it out yet
but eventually he’ll have to cough in-between positions to try and get it up.
And then after that 20 minutes of percussion physio we go into
a PEP mask which he wears and breathes 10 sets of 10 breaths in
and that helps get pressure into his lungs
to get underneath the mucus to help move it as well.
I mean the difference is too profound not to have a look at it.
Who knows how it will play out in the future
but what we’re talking about in terms of us just moving to Australia
although we’d move away from all of our family network and all of,
the community that we have back here.
What it might look like in terms of his life expediency
and as quality of life could potentially be so different, that we just have to look at it.
We’ve been as far as contacting the CF Melbourne branch to find out if we can
access medicines over there. All options have to be on the table.
I think it might be a matter of moving there and
finding out if we can get it.
People on Kalydeco, they go to hospital less for instance.
They get far less infections. If they do get infections, they clear them a lot quicker.
They don’t have the degradation of quality of life.
So what we see with Kalydeco is, rather than the slow decline that we get in cystic fibrosis,
it’s effectively paused.
It’s a lot of money and there’s no hiding from the fact is there.
It’s a huge amount of money. The other side of it is, it’s a huge amount of quality of life for our child.
Obviously I think it’s too expensive. There’s no hiding from the fact
but if that medication didn’t exist at all
that would be a completely different playing field.
We wouldn’t have these options that were looking at.

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