Beck's children, aged 17 and 12, can't eat without being in excruciating pain.

“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.

It was an article she stumbled across in the New York Times about a woman with median arcuate ligament syndrome (MALS) that finally started to help the desperate mum understand her son's pain.

"I thought 'This is Brayden!' the article mentioned a surgeon in America..so I contacted him and he asked me to send CT scans."

Dr Abdullah called Beck from the US and they spoke for 45 minutes. He diagnosed her son with MALS.

"I was like the weight of the world was lifted off my shoulders. Part of it was validation, I knew there was something wrong. The next feeling was fear...he was all the way in America," she told Mamamia.

When she told Brayden he burst into tears "he believes me mum, he believes me," he cried.

"We were sobbing messes," admits Beck.

Brayden and his mum and step-dad are flying to America next week for life changing surgery. The surgeon is going to remove the ligament in Brayden's body that is causing him so much distress and pain. He has a 93% success rate.

In Australia, most doctors haven't heard of the disease, let alone know how to treat it. Beck says she has had to explain it to every medical professional she has come across. Surgery is possible here, but apparently all Australia offers is a 'snipping' of the ligament, which doesn't remove the issue for good.

The American surgeon doing Brayden's procedure has offered to come to Australia and teach his technique. Beck is hoping a university hospital here sponsors him to do that.

But in the meantime, her family is grappling with some more devastating news. In the past month it has become obvious that Beck's daughter Ashleigh, 12, also has MALS.

She started getting sick in July last year, but in the past month its gotten worse.

"It's the same, she wants to eat, she love to eat. You normally can't fill her. It is the most crippling pain," said Beck.

If this had happened a month ago, the family might have been able to organise for them both to have surgery, but it's all happened too late.

Up until now Brayden has managed to stay pretty positive, but watching his little sister is taking a toll on him.

"He said to me last week 'take Ashleigh mum not me. Please take her.'" said Beck.

"It breaks my heart every day. I am the fixer, when they're hurt - mum is supposed to make it better. When you can't it's the worst feeling in the world," Beck told Mamamia.

Beck's family want to tell their story so other Australians who might be suffering with MALS know they aren't alone. There are no statistics in this country for the disease, it's too rare. But Beck has met four other people in her state of Victoria alone. So they're out there.

"I don't think anyone should have to be treated the way my kids are being treated. It wasn't in their heads - it was real," she said.

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