Wollongong's 2019 Citizen of the Year, Professor Justin Yerbury, expressed his frustration on Monday after he was turned away from a Royal Caribbean cruise on the weekend due to his condition.
Prof Yerbury is a world renowned molecular biologist who has spent the past decade researching motor neurone disease (MND) - even after he was diagnosed with the degenerative condition in 2016.
He and his wife Rachel have faced many challenges since that diagnosis, and had keenly anticipated the seven-night cruise from Sydney to New Caledonia this month along with their daughters and other family members.
They'd filled in a special needs form and supplied a wealth of information about MND to Royal Caribbean when booking the cruise on Explorer of the Seas last November.
In the past four months, they'd also sent countless emails and made several attempts to talk directly with a Royal Caribbean representative or the ship's doctor about the situation - to no avail.
The only correspondence they'd received from Royal Caribbean was in response to a recent tweet by Prof Yerbury, and it gave no indication that he would be denied access to the cruise.
So when their party of nine - including two carers - turned up for the cruise on Sunday afternoon, they were shocked at the decision to turn him away.
"This was an opportunity for my family and extended family to make memories and have some quality time together, which is very special for all of us," Prof Yerbury said on Monday.
"We may not have many other opportunities. I was looking forward the most to being with family and going on a trip together like we used to always do."
Mrs Yerbury said her daughters - Talia, 23 and Maddison, 20 - had been especially looking forward to spending time with their father.
"While Justin has been very stable and well for the past 12 months, we really don't know how much longer he'll live," she said.
"So after months of planning and weeks of packing, to get to check-in only to be referred to the doctor and told he wouldn't be allowed to board was just devastating."
Mrs Yerbury said despite booking a disability room and filling in the special needs form, the female doctor said she also needed a medical clearance from Prof Yerbury's specialist.
"We got Justin's neurologist on the phone, and he spoke to the doctor and told her that Justin was stable and fine to travel, but she didn't listen," she said.
"The doctor also said the two carers we had with us weren't nurses - but one of them told her he had 25 years experience and could care for Justin in the dark, which he actually does.
"She said the ship wasn't equipped to look after Justin in the event of an emergency - but surely there should be a plan in place for medical emergencies for any passenger?"
As well as the cost of the cruise - around $12,000 for the group - the Yerbury's have had to fork out $4000 to courier Prof Yerbury's equipment to Sydney, $2500 for travel insurance as well as other expenses.
On Monday, a Royal Caribbean spokeswoman said the company would refund the cruise fares for Prof Yerbury and his travelling companions.
"Regrettably, a male guest was unable to take his planned seven-night cruise to the South Pacific onboard Explorer of the Seas, which departed Sydney on Sunday," the spokeswoman said.
"Upon presenting to the terminal for boarding, a decision was taken by the ship’s doctor to deny boarding on the grounds that the ship would be unable to provide the level of care required in the event of an emergency at sea."
However, Mrs Yerbury, said it was unlikely the additional travel costs would be taken into account. Meantime the emotional cost of the incident continued to take its toll.
"There's things that money can't reimburse," she said.
"It's so hard for Justin already to do the daily things everyone takes for granted. And it's hard too for him to get respect and be treated as a person. And he didn't get the respect he deserved here. He felt invisible."
Prof Yerbury said he felt discriminated against because of his condition.
"They were rude, they didn’t even speak to me or make eye contact. They didn’t treat me as a person," he said.
"They made all sorts of excuses why we couldn’t go. They spoke to my specialist but still refused me access."
Prof Yerbury said Royal Caribbean needed to review their processes, adding a specific consultant to work with special needs passengers would be helpful.
"They need to be respectful and flexible. They should be upfront if they can’t cater for people, not wait four months and tell you as you are leaving," he said.
"They need to take responsibility when their systems fail."
Prof Yerbury works tirelessly at the Illawarra Health and Medical Research Institute to uncover the cause - and ultimately cure - for MND.
MND is the name given to a group of diseases in which the nerve cells - neurones - controlling the muscles that enable us to move, speak, breathe and swallow; undergo degeneration and die.
Prof Yerbury has a genetic form of MND and has lost his mother, sister and other family members to the disease.
With the ventilation he'd been using failing, he underwent a tracheostomy and laryngectomy in January 2018 so he could continue his vital research.
