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Jack’s story
August 22, 2025
Jack first came through the doors of Very Special Kids House as a toddler, nestled in the arms of a family navigating the early days of a life-changing condition.
“We were told that he would never walk and that he was unlikely to survive past the age of two,” his mum Lisa shares. “It was a devastating diagnosis.”
Born in 1999, Jack was diagnosed with a degenerative neuromuscular disease called Spinal Muscular Atrophy Type 2.
At the time, I could not see a way forward with anything. It was very dark and very bleak.
That’s when Lisa made the decision to reach out to Very Special Kids.
“I remember the day that I found the courage to pick up the phone and ask for help. The voice on the end of that phone was so compassionate, kind and helpful.”
For close to two decades, Jack became a familiar and much-loved presence at Very Special Kids House – with more than 60 admissions for respite care.
For Jack, this was a sanctuary, a second home filled with adventure. For his family, these stays offered ‘life-bringing’ respite.
Lisa reflects, “Very Special Kids wrapped around our entire family and supported us to live a life that was hopeful, joyful, and always supported.”
One of the most enduring relationships Jack formed during his time at Very Special Kids House was with Margaret, a volunteer whose bond with him continues to this day.
When Jack and Margaret were together, the four walls of the hospice expanded into a world of exploration. They could spend hours touring the streets of Google Maps visiting cities, carparks and faraway places.
“Jack gave me joy,” shares Margaret. “He brought out my inner child. He’s intuitive, funny, and has this innate politeness that makes everyone feel seen and valued.”
Recently, Jack returned to the hospice to see the newly rebuilt facility.
Now 26 years old, he toured the space with keen interest, asking thoughtful questions about how things work and what’s changed.
While some familiar faces greeted him, many were new. Yet Jack, always found a way to dive deep into conversation.
Margaret watched with quiet pride as Jack toured the space. “He’s not the young boy or teenager I once knew,” she reflected. “He’s got his own inner strength and picks up on subtleties in some ways that other people don’t.”
Jack’s visit was more than just a walk down memory lane — it was a reminder of the many different stories that emerge from Very Special Kids.
Each family’s experience is unique. For some, like Jack’s, the journey continues beyond these hospice doors. Ageing out of the service can be daunting, and the unknown that follows can sometimes feel overwhelming.
Lisa shares, “It left a significant gap in our world and I still get emotional when I think about the last day at the house and all of those goodbyes…There’s nothing quite like it out there.”
Today, Jack lives with independence in a supported facility, continuing to explore the world around him with the same curiosity and joy that defined his childhood
Lisa’s connection with Very Special Kids also continues, now serving on the board to help shape the future of the organisation that supported her family for nearly two decades.
My intention as a board director is that I can contribute positively to the future of Very Special Kids and ensure that others that now unfortunately will come after us, that they get the same sort of support and hope that my family did.
