Perth parents Ashleigh and Cody welcomed their little boy at just 33 weeks – six weeks earlier than expected – and nothing could have prepared them for what would ensue in the following 11 months.

Luca, who was born on November 9, the day after his mum’s baby shower, entered the world with CHARGE syndrome, a genetic condition that affects the heart, nerves, genitalia, eyes and ears.

Red flags first appeared at Ashleigh’s 20 week scan when she was told there could be “a lot wrong” with Luca, but results from subsequent testing weren’t delivered until the day he was born.

“It was a very horrible experience,” she told news.com.au, adding that because he arrived so early, “we weren’t sure if he would make it”.

“He was in and out of hospital for a long time, he had eight surgeries,” she said.

The family have been staying afloat on Cody’s income after Ashleigh quit her job to care for Luca around-the-clock, with the little guy having spent more time in hospital than out.

A GoFundMe was established recently in support of the family who will undoubtedly face years of challenges in their effort to give Luca the beautiful life he deserves.

“He’s had a lot of complications with his brain. He has two shunts on each side, but they both got blocked and needed clearing, and they also replaced the valves,” Ashleigh said.

“He can’t eat, so he has a feeding tube,” she added, saying he was on the waiting list for a new device that would allow him to take food in via his belly button.

His short life has been punctuated by tremendous difficulties, including the time he nearly died in hospital after vomiting for five days straight.

“It’s been horrible, but you have to just be strong for him. Sometimes I have my moments and ask, ‘why us?’. But at the same time, he obviously chose us for a reason,” Ashleigh said.

Despite the immense battle, Luca’s bright personality has shone through.

“He’s the cutest little boy, he’s so happy considering everything he’s been through,” his mum said.

“Obviously there’s going to be so many more hurdles as life goes on,” she added.

Luca sleeps with oxygen and monitors at night because he often stops breathing entirely, and requires ongoing specialist support in the form of things like occupational therapy, physio and speech therapy.

“As he gets older we don’t know how he will go with his speech or mobility, and we don’t know how his vision is,” Ashleigh said.

“He might need more brain and heart surgeries in the future or work on his genitalia, we don’t really know what his future holds.

“We hope he gets to live a long life, but you just don’t know.”

The family have been treasuring their time with Luca, who has now been out of hospital for seven months.

Donate here to support Luca and his family with costs associated with his treatment.