His mum Caitlyn Pyatt, a property manager at Ray White North Lakes has managed the demands of her career while ensuring Jack receives the medical care he needs.
Her family includes husband Ashley, stepchildren Nathan (14) and Mahalia (13), and daughter Dakota (9).
Nathan also has the genetic condition and has undergone several surgeries, including a fixator on his arm.
Jack has been admitted to hospital nearly every second year for bone-related surgery, all performed by paediatric orthopaedic surgeon Dr Sarah Murgatroyd at Redcliffe Hospital.
“When the tumours grow, they cause pain and reduced mobility,” Ms Pyatt said.
“The surgeries involve using specialised tools to remove additional bone growth, requiring precision as surgeons work with smaller ligaments, muscles, nerves and arteries in a confined space.
“The hardest part is seeing him struggle with basic tasks like writing or running.”
Ms Pyatt said: “It's heartbreaking when he gets frustrated because he can't keep up with his peers”.
Without the surgeries, Jack would not be able to walk properly and his fine motor skills would be impaired, she said.
“It truly teaches you never to take simple things like movement, sight and hearing for granted,” Ms Pyatt said.
“The most difficult moments are when Jack goes under anaesthesia and wakes up disoriented and in pain during recovery - it’s more than I can handle as a mother,” Ms Pyatt said.
“I feel very fortunate to have my husband and such a strong support network so that I never have to face those moments, or any of this journey, alone.”
The surgeries primarily involve using specialised tools, such as surgical chisels, to carefully remove additional bone.
In some cases, the bone can be easily removed from its position, while in others, it must be shaved down, she explained.
“Throughout these procedures, the surgical team remains mindful that they are working on a child - the ligaments, muscles, nerves, and arteries are significantly smaller than those of an adult, the workspace is much more confined and requires extreme precision.”