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A young boy is being held by his dad who is facing away from the camera. He is smiling and laughing.
2
Feb 2024

Luca’s story

Eight-year-old Luca is known by many nicknames. From cuddly koala to cookie monster, his cheeky personality always shines through! You might not know from his charming grin, but Luca has experienced countless hurdles in his short life.

At only three weeks old Luca turned blue. By the time he reached emergency he was limp and unresponsive and was rushed to the resuscitation area by a team of doctors. Luca’s parents, Nadja and Marc, spent the next five nights with their little boy in the newborn intensive care unit.

“We hoped it was just a one-off thing,” shares Nadja. “But along the way, everything that would be a little problem on a normal kid, would just end up being huge for Luca.”

By Christmas time, Luca was regressing even further. He experienced non-stop seizures, couldn’t cry or laugh and slept 17+ hours a day. Doctors told his family to prepare for the worst.

“Every morning, I’d go to his room and check if he was still alive. There were a lot of tears at that time, and so much was unknown,” shares Nadja.

Marc continues, “No one could give us any kind of timeline. We started speaking to palliative care and preparing for all the kinds of things you would normally do towards the end of someone’s life.”

This is when Marc and Nadja first learnt about Very Special Kids House, a place that could provide Luca and his family a much-needed break

Recalling their initial hesitation Nadja shares, “When it’s your child, you want to be very careful who you’re trusting them to, especially when they have a disability.

“Once we knew it was a safe place for Luca, Very Special Kids was amazing. You just feel such a big weight off your shoulders… like you can breathe easier.” 

A young boy is being helped by his mum as he plays with sensory equipment.On an average hospice stay, Luca will spend quality time with highly trained nurses and therapists.

His favourite activities include zipping around in his wheelchair, crawling through the multi-sensory room and splashing in the bath. Another firm favourite is art therapy.

Nadja laughs, “He’s not afraid to get his hands dirty! He likes the colours, texture and it seems to make him happy. It’s also so special to see his artwork when we pick him up.”

It also offers Nadja, Marc and Luca’s big sister Lilijana an opportunity for some much-needed respite.

“When I pick up Luca from Very Special Kids, I know he’s had a great time and I just give him so much extra love because I’ve had that time to breathe.”

“It also gives Lili that one-on-one time with us, without us having to worry Luca is okay.”

To this day, Luca hasn’t been given an official diagnosis. While his condition is stable, every day can be unknown for his family.

Very Special Kids has stood by the side of countless children and families as they navigate life and death with childhood life-limiting illness. Thanks to the support of our generous community, children like Luca can experience the best quality of life – no matter how long or short their life may be.

Speaking to their own experience, Marc shares, “We feel better about using the services if we know we’ve helped them survive. It’s nice to be able to give back.”

Nadja adds, “The best way to support families like ours is to support those who support us.

“We are very lucky to have Luca, and we’re very lucky to have Very Special Kids in our life.”


Categories: Family News
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