Brimming with kindness and curiosity, 7-year-old Bill is happiest when he's with his family on their farm. He loves to work with his Dad and Pa, rounding up sheep and playing with the farm dogs, riding bikes with his sister Lexi or fishing for whiting with his uncles.
Bill knows how to embrace a challenge. Since the day he was born, Bill has been living with a serious illness.
When Bill was born, Mum Stephanie and Dad Cameron noticed his breathing was erratic. Baby Bill was whisked away for tests and by that afternoon, they were given the news that no parent could ever prepare for — he was diagnosed with Primary Ciliary Dyskinesia (PCD), a lifelong condition with no cure.
“I think we were probably in shock and ran on adrenaline just to keep going and make the best choices we could for our son.” Bill’s mum, Stephanie.
Bill spent weeks in NICU on life support and breathing machines. The family spent their first Christmas together in hospital. His adoring sister Lexi was just a toddler, trying to understand what was happening to her baby brother.
Over the years to come, the hospital would become a second home. Managing Bill’s condition requires daily physiotherapy, medications and frequent stays in hospital, hours away from the family farm.
During the pandemic, Bill’s respiratory condition has made him more vulnerable. Hospital visitors have been limited to keep kids like Bill safe. But he really misses his family and friends. Being a kid in hospital is more isolating than ever before.
“The hardest thing for Bill is missing out on doing things with his friends or family that he loves. He missed his own birthday party because he was too sick.” Bill’s mum, Stephanie.
So when Bill and his family found the Starlight Express Room, they were in awe. Starlight gave Bill something to look forward to while he went through uncomfortable treatments and therapies. He could play with Captain Starlight, make new friends and escape from the world of hospital. Now Bill visits Starlight every day!
The Starlight Express Room has also given the family a place to spend time together. When Lexi and Dad come to visit, Bill loves to challenge them to a game of Mario Kart.
“Visiting the Starlight Express Room brings instant happiness to Bill.” Bill’s mum, Stephanie.
Spending time in the Starlight Express Room helps Bill reenergise, play and connect with other kids during an isolating and stressful time. When Stephanie was asked how important laughter and play has been in her family’s journey she said, “It’s essential.”
Being sick shouldn’t mean missing out on the fun of childhood. Happiness matters when it comes to positive health outcomes for sick kids. While Bill has missed birthdays, basketball, fishing and even his concert, Stephanie and Cameron have helped him stay positive and to find moments of laughter and fun in his hospital journey.
Bill knows how to embrace a challenge, and he knows how to have fun along the way.
“The Starlight Children’s Foundation is an equally important part of the team that contributes to our journey and maximising Bill’s health and wellbeing in hospital.” Bill’s mum, Stephanie.
