When a child is diagnosed with an illness or injury, everything changes in an instant. For the Barley family, that moment came in March 2026 when their baby boy Jaxson, was diagnosed with not one, but two rare conditions. With the support of Ronald McDonald House South East Queensland, they found comfort, connection, and a place to call home during an incredibly challenging time.
Following a CT scan and genetic testing, Jaxson was diagnosed with Lambdoid Craniosynostosis (a rare condition where part of the skull fuses prematurely) and Noonan Syndrome (RRAS2 subtype), an uncommon genetic disorder. Alongside these diagnoses, he also faces ongoing neurological concerns that require close monitoring through MRIs.
For the Barley family, the news was overwhelming. Living in regional North Queensland, accessing the specialist care Jaxon needed meant travelling to Brisbane and being away from their support network.
To give Jaxson the best possible outcome, he underwent Posterior Cranial Vault Remodeling (PSVR), an almost seven-hour procedure designed to allow his brain to grow properly. Although he required three blood transfusions, everything went well and was a successful procedure.
With ongoing medical appointments – often every three to six months and across four different specialists – the Barley family needed safe, reliable accommodation near the Queensland Children’s Hospital. Ronald McDonald House South East Queensland became that place, providing a welcoming home away from home.
For over a year, Ronald McDonald House South East Queensland South Brisbane has provided free accommodation that keeps them close to Jaxson’s care.
Beyond proximity, it was the compassionate support of the team and volunteers that made a lasting impact. The family expressed how the team and volunteers were all welcoming, kind and always willing to lend a hand.
For regional families like the Barleys, Ronald McDonald House South East Queensland plays a vital role in helping families stay together and close to the care they need. Our Houses provide a supportive environment just steps from the hospital, ensuring families can focus on what matters most.
