Ash’s mum Nataasha will never forget the “out-of-body experience” she felt the moment she was told her little boy had leukaemia.
“It felt like the world slipped away beneath me as this intense grief took over,” she said.
It had been a long and stressful journey from when three-year-old Ash first became sick to the devastating day of his diagnosis.
Ash had been tired, had frequent temperatures, was off his food and not happily playing like he normally would.
It was 2022 and some of Ash’s symptoms were initially thought to be Covid-related.
After a month or so of various medications and follow-up appointments, Ash still wasn't getting any better. In her heart, Nataasha knew something wasn’t right.
“He was so pale, and the bruises didn't add up when he was asleep most of the time,” she recalls. “Ash has a speech delay, and back then he couldn’t verbalise anything so he’d be crying and screaming, and I couldn’t work out why.”
Not taking any chances, she took Ash to the children’s hospital to try and get some answers.
Tragically, blood tests revealed the news that shattered the family’s world- Ash had acute lymphoblastic leukaemia.
‘Never in a million years did I imagine it would be cancer. It’s been a blur and very traumatic ever since.”
Every aspect of family life shifted in that moment as Ash was admitted to the children’s oncology ward to start treatment.
After leaving her job when Ash was born, Nataasha supported him full-time in hospital. Dad Adam had to juggle managing the family business seven days a week with hospital visits while also caring for older sister Sienna who missed her little brother terribly.
It was heartbreaking for Nataasha and Adam to see their caring, creative little boy who loved playing and building things to suddenly be bed-ridden in an oncology ward.
“For a little boy to go from being with his family and living a normal fun life to all of a sudden being in hospital, it’s a lot to deal with,” Nataasha said.
Ash endured over 800 doses of chemotherapy as well as blood and platelet transfusions, multiple surgeries and countless injections and scans. He needed a PEG feeding tube in his tummy and surgery on his teeth.
The treatment left Ash with a severely compromised immune system. Seeing friends, family or a simple trip to the playground or supermarket were all off limits.
“During that first year of treatment we couldn’t go anywhere; we were very isolated,” said Nataasha.
Hospital was overwhelming for Ash who struggled with the loss of control and the fear of every new treatment and procedure.
“As a mum I felt horrible having to pin him down for his medicines or injections. He would scream and cry as he was too little to understand why it was all happening. Despite everything, Ash did his best to take it all in his stride.”
Amid the darkest times for the family, Starlight helped bring moments of relief and happiness.
Ash loved seeing the Captain Starlights when they visited the wards; their fun and games helped break up every long, lonely day. One of Ash’s happiest memories was when the Captains presented him his very own Starlight cape and hat, which he proudly wore in hospital!
During his months in isolation, Ash started playing computer games to help distract him and to give him the chance to socialise and play with other kids virtually. His favourite games were Minecraft and Roblox and his Mum joked that he got so good at them he might end up being an engineer one day!
When Ash discovered the games in the Starlight Express Room, it became his go to destination in hospital! The Starlight Express Room also gave him the opportunity to play with other kids in hospital after missing out on so much.
After a gruelling two and a half years, Ash has finished his treatment for now. He still has difficulty walking, tires easily and is tube fed. Ongoing OT, physio, speech therapy and blood tests continue as well as oncology checks every six weeks. The worry of secondary cancers as his life progresses is always on his parents’ minds.
As Ash slowly gets back to all the things he loves, Nataasha said they are proud of how far he’s come – with his speech, making new friends and building his confidence and independence.
“It brings us so much joy to see him achieve so much. He’s had so many little things are ‘firsts’ for us - first play date with a school friend, first birthday party and first award at school assembly.”
There’s more joy on the horizon for Ash with the exciting news his Starlight Wish has been granted.
Given his passion for gaming, Ash wished for a Minecraft-themed gaming set up including computer, keyboard, desk, chair and monitor.
“He is beyond excited; this will be huge for him. Gaming is so perfect for Ash as it helps him connect with his friends, spark his creativity and maybe even is dad will get in on the action too!” Nataasha laughed.
While Ash faces ongoing treatment and hospital appointments, knowing that Starlight will be there helps make every visit easier – for Ash, hospital means the Starlight Express Room!
“Having Captain Starlight there helps Ash associate hospital with something good instead of something negative. The happiness Starlight creates really helps boost kids’ mental health.”
