06 Nov Asher’s Story

When people think about a child with complex medical needs, they often focus on the challenges.

And for Asher, a single mother of three energetic sons, including Ryder, who was born with G/BBB Syndrome, an extremely rare genetic disorder, “We’ve faced plenty of those over the past 16 years.” Asher explains.

When Ryder was born 16 years ago, doctors quickly realised there was an issue.

“He wasn’t breathing properly and his air intake was a bit off. So, he went with the Royal Flying Doctors to the specialised ambulance and was taken to the neonatal unit in Perth.

I had to stay behind and have surgery myself because there were lots of complications with the pregnancy.”

Once able, Asher made the 230km journey from Busselton to Perth to be by his side, not knowing that she and her newborn son would remain in the Hospital for the next 10 months.

With Ryder’s extremely rare disorder came the reality of needing to access ongoing medical care in Perth far from home and loved ones, for the rest of his life.

For almost six years, Asher and the boys relied on family and friends for a place to stay, but often found themselves needing to pay for short term accommodation, which came at a considerable cost. Occasionally, they would stay at the 18 room Ronald McDonald House in Subiaco; however, rooms were hard to come by, as its limited capacity meant they were constantly full.

“I remember they would ring us and say, I’m so sorry, we’ve had to put somebody else in, and you can’t stay this time.”

That was until 2015, when Ronald McDonald House at QEII opened its doors, enabling the charity to support more regional families with ill or injured children, including Asher’s.

“Before we started staying at Ronald McDonald House, I’d exhausted all my savings on hotels and Airbnbs.

I’d had to stop working because Ryder was in and out of the hospital every six weeks.

The stress of finding accommodation on top of everything else was overwhelming.”

For over 10 years, the family has called Ronald McDonald House WA their home away from home.

“Ryder was six when we first stayed at the new house, and we still do regularly.

Now, when we make the trip from Busselton to Perth, I know we have somewhere safe to stay.

Somewhere, the staff know Ryder by name.

Somewhere, our family can all have a hot meal after a difficult day at the hospital.”

For regional families, when a child becomes ill or injured, it adds additional layers of complexity to an already complex situation.

And in a state as vast as Western Australia, services like Ronald McDonald House WA have become essential in helping to make things just that little bit easier for families navigating their child’s medical journeys.

“When I’m at Ronald McDonald House WA, they are my support, not my blood family, but a second family.”

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