“It was awful. He looked at me with these eyes saying ‘help me.’ But I had a team of medical doctors telling me there was nothing wrong with him.”
Recalling this particular story brings Victorian mum Beck Neate, 38, to the brink of tears.
She’d been pushing back against doctors for months. Her teenage son had lost 15kg and was in a wheelchair, he’d been non-stop vomiting and couldn’t eat without being in excruciating physical pain. He was so malnourished he looked like a frail old man.
The disease Beck’s children has is incredibly rare. It was represented in an episode of Grey’s Anatomy last year.
But it was all in his head, apparently. Scans and blood tests had come back normal, so it was decided it was psychological. He had an “avoidance to eating problem.”
“He needs to just learn to live with his pain. Let the pain walk alongside him because we don’t know how to get rid of it,” doctors told her.
They brought Brayden into the room, who was clutching his vomit bag something he always carried out of necessity.
The head doctor had two medical students with her and declared; “We don’t think you need that anymore.”
She picked up a garbage bin and turned to the students; “drumroll please.”
Reluctantly they banged their hands on the table in a makeshift drumroll, while Brayden was forced to throw his vomit bag in the bin.
Beck was devastated.