KAILA Maartensz’s Instagram account is a living testament to an enduring love, and a heartbreaking battle.
It tells of the love story with her husband Matt Maartensz, 29, who touched the hearts of many as he battled with cystic fibrosis.
He lost his fight with the debilitating lung condition on March 31, dying at home, his beloved wife by his side.
“I don’t even have the words to express how much I loved you, how much I’ll miss you and how heartbroken I am right now,” she wrote on Instagram the day he died. “I will love you for ever my fierce dinosaur.”
Matt’s lungs failed him, but he and Kaila, who also suffers cystic fibrosis, loved each other large, with every breath.
When she asked her dying husband what he’d change, his answer was not his failing lungs.
“Dance more,” was the reply.
“So dance,” an emotional Kaila 32, wrote in a post to her Instagram account late last week in the wake of her loss.
“Whenever you can and however you want. And think of Matt while you’re dancing.”
There’s a bittersweet irony in the fact that the disease that killed Matt and cut the young couple’s love story so short is the same thing that brought them together.
The pair met as children in the wards of Perth’s Princess Margaret Hospital — both diagnosed with cystic fibrosis — according to an online fundraising page set up for the couple when Matt’s health spiralled downwards late last year, to help them breathe easier, at least financially.
Regulars on the wards as they grew up. He wrote her a love letter when he was 15, and she was 13.
They fell in love as adults, both struggling with lungs that continued to deteriorate.
In 2013 Kaila received a lung transplant. Matt followed in 2014, receiving his new lungs in the same week he asked Kaila to marry him.
In 2015 they tied the knot, deliriously happy.
‘I DON’T WANT TO LEAVE YET’
But in December last year Matt was hospitalised, struggling to breathe.
After two weeks in intensive care, doctors told him there was nothing they could do to help him.
He fought anyway — “for every breath” — friend Angela Terry wrote on the fundraising page she set up.
“Kaila means the world to me and I want to do everything I can to keep me in her world,” he told The West Australian from his hospital bed in February.
“I am not even 30. I don’t want to leave yet.”
A month ago, he went home from hospital — needing 24/7 care.
On March 27, as he wasted away, Kaila posted of their love and his struggle.
“Watching someone you love waste away before your eyes is completely heart wrenching,” she said.
“Seeing them forget little things each days is more distressing than I can explain.
“But when they tell you that seeing you still makes them happy every single day despite all of the trauma that is happening to them it makes you realise you’re actually one of the lucky ones. To have a love like ours, even in a time like this.”
The pair decided last December to make every minute count.
‘STAY UP LATE AND CHAT TO YOUR HUSBAND’
Two days ago in a heart-rending post she listed the things she’d learned since the doctors ran out of hope last December.
“Things I’ve learnt over the past four months,” the post began.
“If you want to travel, do it … and book the nicer room and bid on the flight upgrade.
“When you want to stay home do that too. If you want to sit on the couch all day watching Netflix, binge an entire series in a day.
“Laugh at yourself. But also don’t be afraid to cry.
“Stay up late and chat to your husband about every little thing on your mind. Don’t worry about having to get up early. You can catch up on the sleep.
“Enjoy the little moments. It’s something you have to be mindful of doing but the little moments are some of the most special ones.
“Don’t be glued to your phone but do take photos of all the memories. Take photos until your phone can’t hold anymore. And don’t forget to back them up.”
It continued with advice to eat chocolate, “but look after your body”; tell people what you feel about them; don’t wait for special occasions to buy presents; “pat every dog you see” don’t feel sad about getting older, volunteer, and sleep in sometimes “especially with the person (or pet) that you love”.
“I don’t think there are many people who don’t take breathing for granted. Once a day take a deep breath and realise how lucky you are,” Kaila wrote.
Kaila will farewell Matt at a funeral in Perth tomorrow.
He’s demanded those who attend the funeral and wear bright colours.
At some point, there will be dancing.