Little Roman was born in November 2024 in Perth, Western Australia, and diagnosed with Fragile X Syndrome – a genetic condition that affects development – at just three months old. His diagnosis followed a “failure to thrive” assessment at two months, after persistent feeding difficulties and poor weight gain. Roman’s mother had a 50% chance of being a carrier of Fragile X, and the diagnosis came just before Valentine’s Day, a poignant moment marked by friends unknowingly writing “xx” to sign off messages.

Early Challenges

Roman’s early months were marked by severe feeding issues. He was admitted to Perth Children’s Hospital (PCH) for two weeks and required a nasogastric tube for nutrition. Despite efforts with various formulas and lactation specialists, vomiting persisted after every feed – resulting in constant laundry and feeding sessions in the bathroom every two hours.

Family Experience

Roman’s parents, both working full-time, faced immense pressure. With no extended family in Australia, they navigated the complexities of disability care alone. Roman’s mother Emily described the contrast between Roman’s birth in Australia and his older brother’s birth in the USA like “night and day,” especially in terms of healthcare access and support.

The emotional toll was profound. “People say when you have a child, your entire brain power is focused on them. That’s not true. When it’s a child living with disability, it’s 100% of your brain at all times. There’s no time for myself, my health, my husband…”

“The appointments are non-stop. I almost didn’t want to take my other child to the doctor when he was sick because I just couldn’t face it – but of course you have to and he has needs too.”

Finding Support

Desperate for help and with no access to the NDIS, Emily posted in a Facebook group offering cash for some assistance from a support worker. A comment recommending Hannah’s House led her to fill out a web form. She received a call the next day and broke down in tears. The support from Hannah’s House was life changing.

With two days of in-home care each week, Emily could visit a coffee shop, go to the gym, or simply shower – moments that restored her sense of self. “When Hannah’s House first came, I sat and ate breakfast in silence. It was a miracle. Sometimes when (a Hannah’s House Support Worker) is here I just sit out there or at the coffee shop and let my mind just wander. I never get to do that otherwise. Every minute of the day is thinking about Roman.”

Even a short break for self-care can make all the difference to returning to care for Roman afterwards; “The reunion after a break is beautiful. He can feel my energy when I come back refreshed.”

Roman has also formed a special bond with his Support Worker, Deki. “Roman lights up when he sees Deki,” his mother said. Deki agrees, “I look after him for a few hours a week. (I do) all the normal things like changing him and feeding him, but then we just play and go for walks in the pram. When no one is watching we dance!”

Progress

At seven months, a PEG (percutaneous endoscopic gastrostomy) was inserted, significantly improving Roman’s feeding. He is growing steadily, and the vomiting is gone. Roman’s parents celebrated seven days without sickness with wine and chocolate – a rare moment of joy.

Reflections

Emily credits Australia’s healthcare system and Hannah’s House for helping them survive the toughest moments. “God sent us to Australia to enjoy the health system and Hannah’s House,” she said. Inspired by the support they received, she added, “I’m going to start a Hannah’s House in America.”