Patrick's story

Ten-year-old Patrick is a real go-getter. He’s always happy, with a warm and infectious personality and a wicked sense of humour.

Despite his vision loss, Pat is super independent and active — catching the bus to school with his older siblings, and even playing on the local footy team with a guide for support!

“He’s the most positive person we know!” say parents Kirsty and Leith.

Many others in Pat’s situation may not be as upbeat.

When he was just two years old, Kirsty and Leith noticed that Pat didn’t seem to be seeing properly.

An MRI showed there were tumours growing on Pat’s optic nerves, caused by a genetic condition called Neurofibromatosis (NF1). The family were immediately transferred to a hospital two hours away from home, where Pat underwent chemotherapy to stop the tumours from growing.

Over the 14-month course of chemotherapy, the family travelled backwards and forwards from their farm to the children’s hospital for Pat’s treatments. Pat’s older siblings Evelyn and John loved to spend time in the Starlight Express Room playing video games and having fun with Captain Starlight while Pat attended his appointments.

As Pat got older he also loved to join in on the Starlight Express Room fun, and had a ball playing musical instruments and games with the Captains.

While the chemotherapy did stop Pat’s tumours from growing, it also lead to his eventual loss of vision. His NF1 condition is an ongoing issue for Pat, and he endures frequent testing to monitor for the return of any tumours in his brain or spine.

Despite all his setbacks, Pat’s positivity continues to shine through. When he was offered the opportunity to take part in Starlight’s Winter Wish Week, Pat jumped at the chance! The family had had to cancel a previously booked trip to the snow because of Pat’s condition and he was hugely keen to live out his dream of having a snowball fight with his dad!!

“Pat’s wish was just amazing,” recalls Kirsty. “It felt like people really cared, and it was humbling the amount of effort everyone went to, to offer such a unique experience.”

The entire family were thrilled by their VIP experience at the incredible Jamala Wildlife Lodge and had a ball with all the snow sports on offer including downhill skiing with the assistance of Pat’s personal instructor Alberto! A huge highlight for Pat was travelling to the Australian Institute of Sport to meet with vision impaired Paralympic superstar, Chad Perris. Pat had the opportunity to tour the AIS and to hold the world’s first Olympic medals designed for vision impaired athletes, each with a different sound inside.

It was an incredible, once in a lifetime, experience for the whole crew.

“It really bought our family together,” says Kirsty. “We didn’t have to think about anything, and for a family who has to think about everything all the time in terms of accessibility for Pat, that meant so much!”

Most recently, Pat has put his incredible sporting talents to good use again.

Even though he will soon have to undergo further chemotherapy to treat a newly formed tumour, Pat pulled on his cap and signed up for Starlight’s Super Swim fundraising event.

Pat swam an amazing 5.124km in the month of February, and raised an enormous $16,401 for Starlight, with the local community and the kids’ school getting right behind his efforts.

Knowing what a lonely place hospital could be for such a social kid like himself, Pat was motivated to raise funds to help Captain Starlight create even more fun for kids in hospital.

Way to go Pat!!