13-year-old Jack has been in and out of hospital his whole life. Despite living with a series of complex medical conditions, mum Lisa describes Jack as an active, thoughtful, and big-hearted kid who is wise beyond his years.
At just six-weeks-old, Jack had emergency open heart surgery to repair holes in his heart that were discovered before birth. Spending the next two weeks in ICU, the hospital felt like it became their second home.
Not long after his third birthday, Lisa noticed that Jack had stopped developing and his cousins were outgrowing him. While too young for any formal treatment, Jack was monitored for the next couple of years, where he was eventually diagnosed with the rare condition, Hypopituitarism, impacting his growth and adrenal hormones.
"When we went to the emergency room and the doctors explained the seriousness of the condition if left untreated, that was tough. You already have your kid's life in your hands, but then when you get hit with a life-threatening condition, you're like, can I really do this?" said Lisa.
During these early years, Jack also developed a hip disorder, required reconstructive surgery on his right hand, and became susceptible to Croup, spending the next four years in and out of hospital. "Those years were the worst," mum Lisa describes.
Every aspect of family life was impacted. Unable to work full-time while she cared for Jack and his younger sister Faith, financially it was an uphill struggle for the single mum.
While getting sick and going to hospital would make Jack feel anxious and scared, fortunately, Captain Starlight and the Starlight Express Room made the hospital experience feel a lot less scary.
Whenever Faith would visit Jack in hospital, they would always go to Starlight Express Room together. It gave them something positive to look forward to and was a great bonding experience. Playing bingo on Starlight TV and building cardboard box forts was their favourite activities.
"The Starlight Express Room gave Jack positive hope and made him happy. It would have impacted his anxiety if it wasn’t there," mum Lisa says.
Then came another bump in the road. When Jack was 10, he woke up one day and suddenly couldn't feel his legs. Rushed back to hospital for an exhausting week of testing, it was soon discovered that Jack had developed Functional Neurological Disorder.
As his body had been under so much stress since he was born, Jack's brain didn’t want to send signals to his legs anymore, and had to re-learn how to walk again. Thankfully now managing at home, Jack requires regular hospital check-ups and rehabilitation.
Now 13, Jack has a very special relationship with his grandfather, and they love riding their bikes together. So, when Jack came across Starlight's Tour de Kids challenge earlier this year, he knew he wanted to sign up. Driven by his positive experience with Starlight and his love of bikes, the whole family did the challenge together, often riding 16km most days, and smashing their fundraising target. The family are looking forward to partaking in the challenge next year!
Commenting on Starlight's impact on her children, mum Lisa says "Until you've lived it, you don't really understand the impact on a family or a sick child. Starlight plays a big part in people's lives. It's a life changer."
