When we first got that diagnosis, we didn't really know
what the life of a deaf/blind person could be.
You envisage the worst thinking about a future for Louis
that might be dark.
You feel like the bottom has fallen out of your world.
Like there's no safety net. There's nobody to reach out to.
I'm just thinking, come on, this is gonna be all right,
because there's a path out of this, and there was no path out of this.
We've come from a place that was really lonely and really isolated
and connecting with another family,
we've been able to join forces and fight this battle together.
- Can you see what country that is? - India.
India, yeah, would you like to go to India one day?
When Louis was born,
obviously that was a pretty happy day for us as a family.
The first day we got him home
we started to suspect that there was something wrong.
I said "I don't think Louis can hear."
EMILY: After he was diagnosed with a profound hearing loss,
it was really quite, quite shocking, we didn't know what it meant.
in terms of communication for him and what lie ahead in his future.
He had bilateral cochlear implants when he was about 12 months old
and that gave him some really great access to sound,
but still after that diagnosis we knew there was more going on.
Actually developed quite slowly
so delays in all of his motor skill developments.
He was really floppy as a baby.
EMILY: It was really hard to watch him struggle
just because we didn't know what we were dealing with.
DAVID: So that gave us the courage to get the genetic testing
that we needed.
DAVID: So it took a long time to process.
I remember days riding home from work and I'd basically cry
for first 30 minutes of the way home
thinking about my son and what his future might be.
And then just had to regroup, I had to get home and be a good dad
for my two kids and be a supportive husband.
They were dark days.
And where are we going today, Louis?
To the doctor.
EMILY: We were just so desperate to connect with another family
or another doctor who had come across Usher Syndrome before.
And that just did not exist.
So Louis is going to lose his vision probably by the time he's 10
with the type of Usher Syndrome that he's got
and... that was devastating.
So what happens sometimes at night?
I can't see.
And what are some of the things we do that make you feel better
when you can't see?
Hold my hand.
EMILY: So Louis currently has night blindness.
He gets quite anxious at night
because he can tell that his eyes are beginning to deteriorate.
He also has a peripheral loss.
So his eyesight is literally just closing in like that.
Sorry, did that hurt your eyes?
We really went into panic mode.
We just thought that Louis needed to see
as many things as quickly as possible before he lost his vision.
EMILY: We began to give him some memorable experiences,
visual experiences.
And it meant as a family as well
we could concentrate on something positive
when we were grieving so much.
But at the end of the day, we were still really alone
and we just desperately wanted to connect with another family.
DANIEL: I was having a coffee in the city
and there was this article about lovely Louis on a helicopter.
And it said in there how he was born deaf so immediately
that picked up my interest
because my boy was deaf and he had just had his cochlear implants.
And it said that Louis was going to lose his sight
so for no other reason than just sheer pessimism,
I thought, I bet this is what Harry has,
this thing called Usher Syndrome.
HOLLY: I have to be truthful to say
I never truly believed that's what we were facing.
So to sit in that room and be given that diagnosis
was really quite difficult.
- I'm just going to get you some... - I'm not eating that!
We had got to a point where we were very, very comfortable
with being the parents of a deaf child using cochlear implants.
How do you then start to process the fact
that your son is going to lose their sight?
The sense that they use to help them hear is going to disappear
and really disappear very quickly.
Here you go, Harry. There's a new A380.
When we were contacted by Holly and Dan that was amazing.
It is certainly one of those articles you could easily flip over
and then he's missed it and then our worlds are completely different.
We found it quite remarkable that when we found the Fellers,
they actually lived in the next suburb.
We had connected with another family in Alaska
but to have another family around the corner
that just meant the world to us.
It was amazing for the boys to connect.
He looked at Lewis and he said "But it's me!"
And we just had our hearts in our mouths.
Effectively, Harry had never seen another kid
who just looked exactly the same as him.
And I guess he felt, "Oh, maybe I'm normal."
The glasses are the same.
We both like trains.
I have a missing tooth. I only have one at the moment.
I have two.
I don't know when I'm going to get another one.
Doctors can give you medical advice
but another family going through exactly what you are going through
can give you that lived experience.
How do you get on the TV?
Sit on it.
We're starting to build a bit of a community of people.
I've got my notes from our last meeting.
Emily and Holly are leading that through Usher Kids Australia
Since we launched last year we've been able to connect
with 12 families with children with Usher Syndrome across Australia.
So we've built this village and now we can push for a cure.
I think in the back of our minds every day there is the thought
that science will not be able to cure Harry
because it is a race against the clock.
So while we're really hopeful that there will be a treatment or a cure
we really need to prepare Lewis for the day to day reality
that he is losing his vision.
G'day, g'day!
I'm Jonathon Goerlach and I do paratriathlon,
which is triathlon for people with disabilities.
Shake my hand, mate. Don't leave me hangin'.
- Cool handshake. - Do you want to race us?
Yeah. Come on, let's go.
So, I was born hearing impaired.
The vision loss aspect of Usher Syndrome
started affecting me when I was about age 15.
I have about five to six degrees of peripheral vision,
so when I'm looking straight ahead I can see my hands about here.
And the daytime peripheral vision just keeps coming in,
maybe to the point where I'll lose my vision completely.
Meeting Jonathan absolutely changed
all my preconceptions of an Usher adult.
He is able to be completely independent.
Society can put low expectations on people with disabilities.
If I can have some sort of influence on them
to have a more positive outlook on life
then I think they're going to be on the right track.
You're the only one that can put limitations on yourself.
So they will be able to share their issues and laugh with each other
and cry with each other and just lean on each other.
The support is everything.
We have a new family - we have an Usher family.
They'll all get a flat together I think.