10-year-old Timmy doesn’t let anything stop him. He’s bright, outgoing and talkative. Timmy was born with a cleft lip palate and has a speech delay, but his mum says he never lets this get in the way of him happily chatting with all the nurses in hospital!
“He’s such a happy social kid who loves the beach and playing with his puppy Hamish,” mum Grace said.
Timmy has faced complex ongoing health challenges his whole life.
He was born premature and spent a lot of time in hospital as a baby with jaundice. He had difficulty feeding due to his cleft lip and needed a nasogastric tube and later a PEG feeding tube.
He had his first surgery at just four months old to repair his lip and then another at 10 months to repair his cleft palette. Timmy recovered well from both surgeries but was monitored closely.
As a toddler, Timmy caught hand foot and mouth disease and spent a week in hospital. He later started getting skin infections – one so severe that it went into the bone in his toe requiring surgery. He also has global developmental delays and autism.
For Grace and dad Shaun, those early years of Timmy’s childhood were marked by constant worry and uncertainty as they faced multiple hospital admissions for various different conditions.
“Our family life has been significantly impacted. One of us is always at the hospital. Timmy has hardly been at home or school, and he’s missed out on so much,” Grace said.
One bright light during the family’s time in hospital was meeting Captain Starlight.
“The Captains were walking around the ward and came in to see Timmy and they made him laugh. He especially likes it when they sing and dance and play guitar,” Grace said. “It really helps him stay positive.”
Sadly, not long after he turned eight, Timmy’s health took a turn for the worse.
He came home from school, had dinner, went to bed as normal but suddenly started vomiting. The vomiting lasted all night and into the next day.
Timmy was immediately admitted to hospital for fluid management, blood tests, an MRI and genetic testing. When the tests didn’t pinpoint any diagnosis, Timmy was sent home.
But the bouts of vomiting continued and so the family were again in and out of hospital.
“The vomiting was frequent and triggered by abdominal pain. It would happen anywhere, at any time – at school, at home or out shopping,” Grace explained. “The pain was so severe it needed to be managed with IV drugs.”
Eventually Timmy was diagnosed with Cyclical Vomiting – but there’s no clear answer as to what’s causing it.
For Timmy, hospital has become his routine, and his mum says he doesn’t really know any different. But as he’s got older, he’s starting to realise that he’s missing out on life.
“He’s had to spend his last couple of birthdays and Christmases in hospital, so we always try and make them extra special for him,” Grace said.
The hardest part for Timmy is missing his friends and as a family, planning for a holiday or to even see a kids show like Bluey or the Wiggles is almost impossible.
“He wants to go to school to see his friends. When he starts getting sick, he starts looking sad because he knows what it means.”
Throughout the toughest times, the Starlight has helped bring Timmy moments of joy and happiness that make hospital feel less lonely. He loves being on Starlight TV and joining in the fun of the daily quizzes and Bingo.
“When he’s able, Timmy loves going to the Starlight Express Room. He has a bit of a giggle with the Captains and loves slapstick humour. Even just sitting in the room watching and absorbing the fun and laughter really cheers him up.”
Last year Timmy endured 22 hospital admissions for a range of treatments and procedures.
Having the Starlight Express Room helps the whole family every time they’re in hospital. “It’s great to see Timmy interacting with people and it gives us a little break too as it can be difficult to keep kids entertained in hospital.”
The family are currently in ‘symptom-management mode’ and Timmy’s mum and dad are so proud of his resilience and positivity despite everything he faces.
Grace says she’s seen first-hand the difference fun and laughter has on kids in hospital.
“It gives them something else to focus on. Lying in a hospital bed surrounded by machines and beeps and noise can be boring and painful. Starlight is there to create joy and laughter and a sense of normality away from the ward. It gives us something to look forward to and brings hope and optimism when things can feel quite bleak. It’s a little ray of sunshine!”
