It was meant to be the trip of a lifetime to celebrate their son’s 18th birthday at Disneyland.

Instead, a sudden medical emergency has left the James family stranded in a Tokyo hotel room, more than $50,000 out of pocket and running out of medicine.

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New South Wales parents Mel and Brad James gifted their son Ryan, who has special needs, a trip to Japan to celebrate the milestone birthday alongside his two younger siblings and grandparents.

Ryan is diagnosed with autism, Global Development Delay and Jordan’s Syndrome – a rare genetic neurodevelopmental condition that affects under 500 people globally.

“We can’t buy him a car or give him a party because he doesn’t like it so we wanted to give him something to remember,” Ms James told news.com.au.

The family flew out from Sydney earlier this month, with their first stop Tokyo.

It was a trip the family had done two and a half years ago without issue, with Disneyland holding a special place in Ryan’s heart.

Photos shared with news.com.au show the James family cheerfully donning the same white T-shirts that said “Happy Birthday” in classic Disney font with a photo of Ryan’s face with mickey mouse ears.

The family enjoyed five days in Tokyo before they were due to fly out to Okinawa to further explore Japan.

That’s when the holiday took a tragic turn.

Trouble at the gates

Despite flying on planes before and travelling to five separate countries in his lifetime, an unexpected trigger led to Ryan having a meltdown as he was due to board the domestic flight.

“I thought it was a good idea for him to go to the toilet before we got on the flight, so my husband took him to the toilet and that’s when he just kept moving away from the gate,” Ms James said.

The mother-of-three told her mum and stepdad to take her two other children on the plane, hoping to meet them on-board once Ryan calmed down.

“We couldn’t get him on the plane, he went into a meltdown – raised voice, very loud, threw himself on the ground,” Ms James said.

“Obviously that triggers the gates and the people there. So, they brought over the manager, we gave him some more medication to try and relax him but it didn’t work.”

Mr and Ms James were forced to stay at the airport with their son, while the rest of the family departed to Okinawa with all of their passports and Ryan’s medication on board.

Fortunately, All Nippon Airways (ANA) was happy to accommodate the trio and booked them on the next flight, hoping Ryan would calm down.

When that didn’t work, the family were rescheduled for a night flight hoping Ryan would be tired enough to board.

“He got on the flight. It takes time to shut the door and everything so by then he took off his seat belt and walked back up the ramp,” Ms James said.

Mr James added: “We didn’t want to cause another meltdown and scare anyone”.

In defeat, the family went to a hotel to spend the night.

No longer fit to fly

While the family received their passports and medication back from the airline that night, they also received an email from ANA the following day informing them Ryan could not fly commercially unless he had a “fit to fly” certificate.

“We were at a bit of a loss. We called the travel insurance and they started to ask for the medical history. And then we called the Australian Embassy and they told us that our direct point of call is the travel insurance company,” Mr James said.

With no clear answer, the family found an air repatriation company which could send a specialist to Japan to issue a fit to fly certificate.

“We paid a very large amount of money for that service and then got told a couple of days later that we need to pay even more money for the flight of the doctor to come to us plus Ryan and his business class ticket back to Sydney,” Mr James said.

“So we paid that again and the insurance company was still asking us for more and more information and finally after about seven days that private doctor from the air repatriation company arrived in Tokyo.”

Filled with hope, the family thought they’d finally get their ticket back home to Australia last Friday.

But to their disappointment, Ryan was deemed unfit to fly because there was no guarantee he would remain seated and not cause any distress.

“Ryan can’t meet that (criteria) unless he is absolutely KO’d and for that to happen it’s going to require him to be heavily sedated in a Japanese hospital, intubated, taken on a flight with a doctor that monitors his breathing all the way home to a Sydney hospital where they’ll need to wake him up,” Mr James said.

The family provided the report to their travel insurance provider and are now waiting to find out how much it will cost them to have their son medevaced to Sydney.

“(The insurance) started to walk us through all the documents we’ve given them and they said we hadn’t declared that Ryan has Jordan’s syndrome and his autistic and all that in our travel policy so be prepared to pay,” Mr James said.

“We said ‘look if that’s the case, that’s the case, we just want to come home and we want you to start the process of arranging that, not worrying about getting all your ducks in a row so you don’t have to pay for this’.”

‘Isolated and alone’

The family are now waiting for quotes to have their son brought back to Australia, with zero certainty on when that will be.

At the same time, the parents only have five days’ worth of a particular medication for their son and have had to half his dosage in a bid to prolong it for as long as they can.

“The other stuff will run out within a fortnight as well, but that’s the most important part because the medication is what keeps (Ryan) in a relatively normal mindset,” Mr James said.

The parents are also losing money to unexpected accommodation fees and are already $50,000 out of pocket for the private service they hired to have their son assessed.

“Every day Ryan stays here, he’s becoming more agitated because there’s nothing to do,” Ms James said.

“We’re jammed into a hotel room and we’re trying not to spend too much money because we don’t know financially how we’re going to get him home,” Mr James added.

“We feel isolated and alone … we just want to come home.”

Adding to the heartache, Mr and Ms James were forced to send their two younger children home with their grandparents as it wasn’t feasible to keep them all in Japan.

A GoFundMe has since been set up to aid the family’s return home.

“The money gets us home but we will go into heavy financial debt to pay this back,” Mr James said.

“Every dollar helps alleviate that stress.”

In the meantime, the family is praying for a miracle that will get their son home before his medication runs out.

News.com.au has contacted the Australian Embassy and the family’s travel insurance company for comment.