Walter’s mum and dad never imagined their little boy would spend his third birthday in hospital undergoing chemotherapy.
Life as they knew it was turned on its head when Walter was diagnosed with Neurofibromatosis Type 1 just before he turned two.
The genetic condition causes tumours to develop on nerves throughout the body. Not long after Walter’s diagnosis, doctors discovered he had an optic nerve tumour.
The very next week, instead of happily playing with his toy cars and kicking a ball around with his big brother Victor, Walter was in hospital starting his gruelling year of chemo.
His mum Adrianne said every part of family life was impacted.
“We’ve had to learn medical terms, procedures and treatments that we’d never even heard of. We took leave from work to care for Walter and had to rely on family and friends to help out so we could try to make life as normal as possible for Victor and keep the bills paid.”
Walter needed two surgeries to have a port inserted to administer his treatment. Chemo left him exhausted and his immune system was so low he was constantly sick and had to spend even more time in hospital.
As Walter was so young it was hard for him to understand why he needed to go to hospital so often and get poked and prodded, or why he suddenly couldn’t do all the fun things he used to.
“Walter wasn't able to be his normal active self for 12 months as he was so tired and worn out from the treatment. It made it harder to just be a normal kid.”
Adrianne said without Captain Starlight there in hospital, Walter would have lost even more of his childhood.
“Without Starlight, Walter would have had an even harder time, and it would have been almost impossible getting him into hospital,” she said. “Every day we went in, he knew he would get to visit the Starlight Express Room once he’d finished his treatment.”
In the Starlight Express Room Walter loved doing craft, playing games with the Captain Starlights and kicking the giant blow-up ball around. The Starlight Express Room quickly became his favourite place in hospital. As parents, it also gave Adrianne and Reid a place to take a breath and have a break.
When Walter spent his birthday in hospital, the Captain Starlights and his clinical team made it special by decorating his room and celebrating his big day with car-themed surprises and gifts.
“The Captains came in and sang him the biggest happy birthday with bubbles and fun. It made a hard day so much lighter,” Adrianne said. Even on the days he was too sick to visit the Starlight Express Room, Walter knew the Captains would come and visit him on the ward and he could join in the fun on hospital TV.
“Starlight helps kids forget that they’re in hospital and I honestly think it helps them recover more quickly because they get a moment where they can forget their treatment and just be kids,” Adrianne says.
After an emotional year, Walter has now finished his last round of chemotherapy and got to ring the bell with the Starlight Captains.
He will still need regular MRIs and appointments with his ophthalmologist, hearing and oncology teams to monitor the optic tumour and to continue to scan for other tumours that could develop throughout his body.
For Adrianne and Reid, one of the greatest joys has been seeing Walter get back to simply being a kid.
“He’s been able to see his friends, go to football games and enjoy weekend trips away. He’s looking forward to joining a local soccer team next season and doing all the things we previously would have taken for granted,” his mum said.
He’s also had the exciting news that he’s been granted his Starlight Wish.
Thanks to our partnership with Virgin Australia, Walter and his family are going to a special Wish Week on the Gold Coast with some behind the scenes fun in Brisbane before heading to the Bluey’s World.
“Walter loves Bluey and wanted to visit Bluey's World for his Wish as soon as he found out it existed! He also wants to visit Sea World because he knows Victor loves animals so much.”
Adrianne said the boys are so excited and can’t wait to see Bluey and Bingo in person.
“Walter’s wish means the absolute world to us. To be able to go on such an amazing trip as a family and to see Walter get something positive after such a difficult time in his little life is truly an amazing gift. We cannot find the words to thank everyone who makes these experiences possible. We knew about Starlight prior to Walter's diagnosis, but we had no idea about the true impact for families until we needed them ourselves.”
