"I've learnt that family and friends are absolutely everything and that it's okay to lean on them and to ask for help because you just can't do it by yourself. Even though I often try.”  

The first few weeks with your newborn should be absolute bliss, but for parents Lara and Brendan, that wasn’t quite the case.

“He wasn’t gaining any weight even though I was feeding him constantly. I could see how hungry he was, but every time he fed, the food would just go straight through him,” explained Lara.

In the first few weeks alone, little Lachie lost 500 grams. Lara went searching for answers, determined to find out what was happening to her little boy and just days later, she received a voicemail she would never forget.

“I knew in my gut something wasn’t right, and then I noticed a voicemail from the hospital asking me to give them a call back.” 

Lara was walking through her local Woolworths when she received the devastating news – her baby boy had cystic fibrosis – the most common life-threatening genetic disease affecting Australian children.  

“I was in the middle of Woolies with my shopping trolley and a newborn baby, and I just started crying.”  

With her parents in China and her partner unreachable on the road, Lara felt lost and alone.  

“I didn't really know a lot about it. I'd heard of it, but only from that rock song - 65 Roses...”

The very next day, Lachie had his first appointment at The Children’s Hospital at Westmead with nurse, Sharon, who would later become like family, and then at just five weeks old, he began his lifelong treatment plan.

Cystic fibrosis severely affects the lungs, digestive system and sometimes the reproductive system, causing an abnormal build-up of sticky mucus that can make it difficult to breathe. Advances in treatment have seen improved quality of life and life expectancy for those with cystic fibrosis, but currently, there is no known cure.

“When he’s well, Lachie’s regular treatment includes oral medication – around 20 tablets a day, vitamins, a nebulizer in the morning, physiotherapy and another nebulizer in the evening. When he’s unwell, it’s a whole different story.”

For the first year, Lachie battled virus after virus, and the family of five struggled to come to grips with everything.

“That was the hardest thing in that first year... seeing him as a little boy first rather than just seeing his illness.”

One of the first things Lachie’s nurse Sharon said when Lachie was struggling with RSV was, “You have to remember that Lachie is Lachie first, and he happens to have CF,” and that mantra has stuck with Lara ever since.

“They don't just look after the kids; they make sure the parents get the support they need as well. Because it's hard, it's really hard, and it's isolating.”

While things haven’t been easy, Lara is grateful for the incredible support team that surrounds her at The Children’s Hospital at Westmead.

Fifty years ago, children with the most common and most serious forms of cystic fibrosis rarely lived past age 5. Today, there are adults with cystic fibrosis who are having their own children.

“Kids with cystic fibrosis just passed away and failed to thrive, but now thanks to research, treatments and incredible care, my four-year-old is absolutely thriving.”

Lara puts Lachie’s success down to the incredible team that surrounds them, including doctors, nurses, dietitians, physiotherapists and more.

“There's just so much extra that they do for the kids to make their experience not even just bearable; they actually make it really wonderful.”

Sydney Children’s Hospitals Foundation currently supports a range of crucial positions across the respiratory team, but with your support, we can do so much more so children like Lachie can continue to receive the world-class care they need and deserve.