Last year Catherine and Greg Hughes suffered every parent’s worst nightmare; the shocking death of their newborn son, Riley.
Worse still was the knowledge that his death to Whooping Cough was entirely preventable.
Riley died from whooping cough 32 days after he was born and when Catherine and Greg posted the video of his little body struggling to breathe on Facebook, it sparked a national campaign for change.
"Riley’s death shouldn’t have happened, we think whooping cough is a disease that just shouldn’t exist in Australia in 2015."
Whooping cough is almost entirely preventable with vaccination but babies aren’t old enough to be immunized until eight weeks.
But Catherine and Greg were shocked to find he could have been saved if Catherine had been offered a whooping cough vaccination in the third trimester of her pregnancy.
"We discovered that the UK, the USA, even New Zealand and Belgium, they had all been offering pregnant mums these free," Catherine said.
"If I had lived in Queensland when I was pregnant with Riley, I would have been offered it, but no other states had implemented these programs."
Turning their grief into purpose, they started the Light for Riley campaign that is protecting thousands of newborns across Australia including their new baby daughter Lucy Grace.
"If you are asking for a proto-type baby, he was pretty much it. He would sleep two hours at a time, then he would wake for a feed, pretty much on the hour, then he would go back to sleep," Greg said.
The partnership that’s saving lives today began with a teenage romance eleven years ago
"We met when I had just finished high school, I was 18, it was the first summer since high school and I met Greg and I fell in love really quickly."
In 2011 Catherine gave birth to their daughter Olivia.
Two and a half years later Olivia was the flower girl at their wedding.
"And pretty quickly we were like “let’s try for another baby” and so three months later I had a pregnancy test and we were pregnant."
Catherine’s pregnancy went without a hitch and on the 13th of February last year Riley was born. He was a healthy 3.65 kilos and instantly won over his big sister Olivia.
"I could stare into [his eyes] all day, I couldn’t describe the feeling of just holding him, I felt complete when I had him so it was amazing."
It seemed like the Hughes family had all that they’d wished for until Riley contracted what seemed like a normal cold.
"He developed a tiny cough and I even remember thinking, "that kind of sounded cute", it was just the most tiny little cough."
They took him into hospital and Riley was diagnosed with Whooping Cough.
"It all happened so fast that even when I got the call and said 'Oh, he’s going to ICU'," Greg said.
"I mean the doctors came and spoke to us and said 'Oh you’re in for a long journey here. You’ve probably got two or three months in hospital ahead of you'."
But Riley’s condition deteriorated rapidly rather than over the next months, the family had mere hours.
They were asked if they’d like to baptize Riley and, in disbelief, they agreed.
"He was boiling hot. I just remember, they took him off the oscillator machine, and his skin felt so hot and I remember just asking the doctor you know, 'Is there any chance at all, like any chance?'"
"And I remember the doctor was in tears."
"Greg was next to me holding him as well and then we just talked to him for a while and watched the monitor sort of, the heartbeat on the monitor slow down, and it kept slowing down, and then it stopped."
Five days after Riley was admitted to hospital, he died. Olivia decorated her baby brother’s casket.
"It just wasn't right and you know, not us and all these things go through your mind you know, like babies don't die in this country from a cough, and why my baby?" Greg said.
"I'm not a bad parent, I'm not a bad person, what did I do to deserve this?"
Despite their pain, Greg went public and urged the West Australian government to immediately make available vaccines to every pregnant woman.
"We both felt that in a country like Australia, children shouldn't be dying in the way that Riley died. There is no excuse for a baby to die from a vaccine preventable disease," Catherine said.
They took their campaign to social media, launching a Facebook page to warn other parents.
But along with the support they were targeted with abusive messages by those opposed to immunisation.
"You learn a lot of tolerance because it is really hard not to lash out and say something.
"The hate and vitriol that Cath in particular received, some of the inboxes about you know, 'you're a baby killer' or a 'child killer' and 'you have the death of thousands of babies on your conscience'."
But Greg and Catherine’s brave campaign for change worked — they broadened their campaign, calling for change across the whole country and spent weekends at baby expos spreading their message and offering free vaccinations.
The West Australian Government made whooping cough vaccines available to every pregnant woman and by the end of last year every other state and territory had followed suit.
"We could have saved at least a dozen babies from severe, life threatening or deadly whooping cough."
The death of Riley was particularly hard on their daughter Olivia, who had waited her whole life to be a big sister.
But late last year they were able to deliver the news she had been hoping for — Lucy Grace Hughes was born at 9:35am on August the 4th weighing 3.9 kilos.
"[We are] feeling good, feeling really good, just relieved."
"It makes me think the world isn’t such a horrible place that it’s you know been for us for the last year and a half."
This time Catherine was given the whooping cough vaccine while pregnant and she’s made sure everyone who visits, including us, has also had the jab.
"We’ve given her the best protection she can have until she’s old enough to be vaccinated herself."