The youngest of four siblings, nine-year-old Jace is a sporty, outgoing kid. He’s a true extrovert who’s always friendly and loves a chat.
Coming home from school on a typical afternoon, Jace was his usual bubbly self when he suddenly complained of a headache.
Within 15 minutes he had collapsed.
His mum Kylee frantically called triple zero as she watched her son lose consciousness. Jace was rushed to the nearest hospital and placed in a medically induced coma.
“It was so sudden, we were numb with shock,” Kylee said. “One-minute Jace was fine and happy, the next he’s unresponsive lying in the back of an ambulance.”
Kylee said the next eight hours ‘felt like a lifetime’ as doctors tried to determine what was happening.
Tragically, scans revealed bleeding in the brain and Jace was rushed to the children’s hospital for life-saving surgery to release the pressure on his brain.
After the first surgery, further tests uncovered Jace had an arteriovenous malformation (AVM) – a cluster of abnormal blood vessels which become twisted and enlarged.
“If surgeons hadn’t operated when they did, we would have lost him,” Kylee said.
Doctors scheduled a second brain surgery just five days later to remove the AVM and blood clot.
The family were told that after the surgery there would be side effects that could impact Jace’s coordination and possibly his speech - but that every case was different.
After the surgery, Jace’s family waited anxiously for the results. Once out of his induced coma, the family learned the extent of the impact on their son.
Jace had developed Posterior Fossa Syndrome and ataxia affecting his speech, coordination and motor skills.
“We knew prior to the surgery there would be side effects, but no way were we prepared. Our previously energetic little chatterbox was now locked in his body. He’d lost the ability to swallow, eat, talk and walk. He had to re learn all the basic functions of using his body,” Kylee said.
Jace spent the next 12 weeks in hospital as he started his long and painful recovery.
During those agonising months, the family felt torn in two. Kylee lived at the hospital with Jace, while dad Michael had to juggle his work to be home for their three daughters Tanesha 16, Izzy 14, and Trinity 12.
For a kid who was so active, the sudden physical limitations Jace faced were painful and frustrating. For the first month following surgery, Jace couldn't leave his hospital room.
Kylee said she can’t imagine what hospital would have been like without Starlight bringing moments of happiness on Jace’s toughest days.
“It was painful to see my energetic, outgoing little boy stuck in a bed feeling completely out of control. The Captains Starlights were the bright spots in his hospital days. Jace loved their senses of humour; as soon as he saw them his whole face lit up.”
Captain Starlight made slime and brought laughter and games to keep Jace happy and distracted when he was isolated on the ward. He also loved tuning in to Starlight TV to play Bingo.
Once he was able to use a wheelchair, Jace enjoyed going to the Starlight Express Room to do art projects and have a break from hospital life. He loved that each day had a new theme and there were so many different activities.
“The Starlight Express Room became Jace's favourite place - we would visit six days a week!” his mum said.
Jace was non-verbal for the majority of his hospital stay and he had to learn how to use his mouth and throat muscles again. Slowly regaining his ability to talk and communicate has been exhausting and emotionally draining.
The effort it takes to talk is frustrating and he gets fatigued because his body isn't responding as quickly or in the way he wants it to, Kylee explained.
“While Jace was in hospital, he used an electronic device to communicate and we had the term ‘Starlight Room’ programmed in because it's where he wanted to go the most,” she said.
Jace is now home and has slowly regained his ability to eat, talk and walk.
“His talking is still a lot slower than it was before, but he’s made amazing progress. To look back to where he was after surgery to now, he has come on leaps and bounds,” Kylee said.
Jace has gradually returned to school this year and is even planning to go on school camp with dad alongside for support. While he’s not able to go back to his beloved sports, Jace has discovered new hobbies and now loves chatting all things Minecraft.
With hospital and ongoing treatment and therapies still part of Jace’s life, Kylee and Michael are so thankful to Starlight supporters.
“Starlight lets sick kids be kids again. It’s so important for kids in hospital who can't go out and are missing school, their friends and social outings to be able to laugh and play. The Starlight Express Room and the Captains bring joy into their darkest days. “
