INTERNAL EDIT transcript

Shanie:

You've got this perfect little baby in front of you and then you get told they've got cystic fibrosis.

I thought it was the end when she was first diagnosed…. sorry….

I just wish I knew what I know now back then.

Chris:

She's the most cleverest girl in the world. It's like she's been here before. She's fierce.

Shanie:

She's the cutest little baby ever with the curliest hair, big blue eyes, and she's so well-behaved -- other than if she's not getting her own way.

Chris:

Oh, I let her get away with everything.

Shanie:

I'm the strict parent.

Chris:

Shanie tries to be strict with her, but in the end, the cute smile wins. 

No one can believe that she's got a chronic illness.

Shanie:

She was this chunky little baby when she was born weighing eight pounds eight. She was just perfect. And then when we got her home, I was just shocked at how rapidly she was losing weight.

Chris:

Shanie definitely knew something weren't right with the baby.

Shanie:

She was projectile vomiting every feed. I took her again to see a doctor and they said it was reflux. 

I felt like I knew I weren't going crazy and I knew I wasn't just a new mum. I knew there was more to it.

Chris:

We had the heel prick and then 10 days later, we got the knock on the door. The baby's got suspected cystic fibrosis.

Shanie:

How long is she going to live for? Is she going to be different to other kids? Is she going to start to look different to other kids? Is she going to live a normal life? 

On Google, it said the death rate was the age of 30. I could not see past it.

Chris:

All my dreams for Trixy were literally shattered. We brought her into this world and her time could be cut short. Soul-destroying.

Shanie:

So it was confirmed the next day by a sweat test that Trixy definitely had cystic fibrosis. I could not speak.

Chris:

But they told us, "look, it's not a death sentence, what it was. It's all changed."

Shanie:

They also told us that there was a drug called KALYDECO that would be able to help her.

Chris:

They basically said this is the game changer.

Shanie:

But at the time, it wasn't licensed for how young Trixy was. Straight away, we started on enzymes, introduced salts, vitamins, physio also. It was intense.

Chris:

The hours felt like days waiting for those appointments. 

Chris:

Today is the one-year anniversary of Trixy starting kalydeco. She's gone from five medications a day to one.

Shanie:

We mix five mils of milk with the KALYDECO, syringe it up and give it to her, and she takes it like a breeze.

Chris:

Trixy's pancreas weren't working at the start of her life and now it's fully functional. Trixy had never been in hospital with cystic fibrosis related illness. You'd never know she was sick. A full year of winning a lottery. Honestly, better.

Shanie:

We've just had her first birthday. Before the medical advances, I would've been worried about her being around that many people in one room. But honestly, she's just thriving. I've never seen her so happy. Some days she's that amazing. We forget she has cystic fibrosis. There's still things that we have to think of because at the end of the day, she's still got CF. My hope in the future is for a cure.

Chris:

I think that the future's bright, the advancements are coming every day.

Shanie:

Nothing anyone can ever do will make us as grateful as we feel than knowing there's something there to help my child. 

It's like a second shot, isn't it?

Thanks to medicine advancing, hopefully, we've got the rest of our lives with her, haven't we?

EXTERNAL EDIT transcript

Shanie:

You've got this perfect little baby in front of you and then you get told they've got cystic fibrosis.

I thought it was the end when she was first diagnosed…. sorry….

I just wish I knew what I know now back then.

Chris:

She's the most cleverest girl in the world. It's like she's been here before. She's fierce.

Shanie:

She's the cutest little baby ever with the curliest hair, big blue eyes, and she's so well-behaved -- other than if she's not getting her own way.

Chris:

Oh, I let her get away with everything.

Shanie:

I'm the strict parent.

Chris:

Shanie tries to be strict with her, but in the end, the cute smile wins. 

No one can believe that she's got a chronic illness.

Shanie:

She was this chunky little baby when she was born weighing eight pounds eight. She was just perfect. And then when we got her home, I was just shocked at how rapidly she was losing weight.

Chris:

Shanie definitely knew something weren't right with the baby.

Shanie:

She was projectile vomiting every feed. I took her again to see a doctor and they said it was reflux. 

I felt like I knew I weren't going crazy and I knew I wasn't just a new mum. I knew there was more to it.

Chris:

We had the heel prick and then 10 days later, we got the knock on the door. The baby's got suspected cystic fibrosis.

Shanie:

How long is she going to live for? Is she going to be different to other kids? Is she going to start to look different to other kids? Is she going to live a normal life? 

On Google, it said the death rate was the age of 30. I could not see past it.

Chris:

All my dreams for Trixy were literally shattered. We brought her into this world and her time could be cut short. Soul-destroying.

Shanie:

So it was confirmed the next day by a sweat test that Trixy definitely had cystic fibrosis. I could not speak.

Chris:

But they told us, "look, it's not a death sentence, what it was. It's all changed."

In the coming days after she got diagnosed, we literally done our own research. And then we found that there was things out there. 

Shanie

If I faced this before the medical advances, me story would be completely different. The lifespan was a lot shorter and hospitals was where a lot of CF patients spent their time. 

Chris

It’s definitely the advancements in care is definitely what helped Trixy. It’s just wow. 

Trixy's pancreas weren't working at the start of her life and now it's fully functional. Trixy had never been in hospital with cystic fibrosis related illness. You'd never know she was sick.

Shanie

No one wants illness for their kid. We’re so lucky with medical advances compared to 20 years ago. Science amazes me.

Shanie:

We've just had her first birthday. Before the medical advances, I would've been worried about her being around that many people in one room. But honestly, she's just thriving. I've never seen her so happy. 

Chris:

A full year of winning a lottery. Honestly, better.

Shanie

Some days she's that amazing. We forget she has cystic fibrosis. There's still things that we have to think of because at the end of the day, she's still got CF. My hope in the future is for a cure.

Chris:

I think that the future's bright, the advancements are coming every day.

Shanie:

Nothing anyone can ever do will make us as grateful as we feel than knowing there's something there to help my child. 

It's like a second shot, isn't it?

Thanks to medicine advancing, hopefully, we've got the rest of our lives with her, haven't we?