When the Tube Arrived – Adjusting to the unexpected
There was a time when Lloyd still ate. Not easily—he never chewed—but he managed.
But over time, I started noticing the changes. He would take less. Push food away. Get tired halfway through. The spark of wanting food was still there, but his body couldn’t keep up. Bite by bite, meal by meal, it slipped away.
And then, one day, it just… stopped.
By the end of 2022, it had become critical. My little boy, my sunshine, had lost 10% of his body weight in just one week. His tiny frame was frail, his skin pale, his energy almost gone. The sparkle in his eyes dimmed. He was seizing up to 250 times a day, his body convulsing while mine broke silently beside him.
He was dehydrated. Malnourished. Starving. And still no one knew why.
Even his genetic condition, the rare diagnosis that already ruled so much of his life, didn’t offer answers. There was nothing written in the scientific literature, nothing clear that explained why he had stopped eating. We were left in the dark, grasping at shadows while he wasted away in front of us.
When we rushed to our main hospital, desperate for answers, I was told it was constipation. Constipation. As if something so simple could explain why my son was slipping through my fingers. A mother knows. I walked out of those hospital doors devastated, dismissed, and terrified. My son was in crisis, and the very place meant to help us had turned us away.
So we drove to the Royal Children’s Hospital. And within hours, they saw what others had missed. They admitted him immediately. The relief was overwhelming, but it was only the beginning of another steep climb.
And that’s when our NG journey began. When my boy first had a tube taped to his face, and I first realised this road was longer, lonelier, and harder than I ever imagined.
That was the moment I understood what it really means to be a rare mum. To carry the weight of the unknown, the constant fight to be heard, and the strength to keep going when your world is falling apart.