Nektaria and Nick Dimos are your ordinary young Greek Australian couple. When they answer the door of their lovely Oakleigh home, they have a big smile and look like they’re bursting with health.
Known to their friends as ‘Nek and Nick’, they’ve been best friends since they were 12 years old, and life has been good to their young family with three kids, many friends, caring relations, success and a good lifestyle. Little did they know that everything would spiral out of control, and Nick would become a reluctant poster child in the latest campaign to make hematopoietic stem cell transplantation (HSCT) freely available to all multiple sclerosis sufferers while also struggling to raise funds via GoFundMe so that he can reap the benefits of the treatment.
“It’s extremely unfortunate that this treatment is only available in Australia for MS patients fulfilling a strict criteria, once the disease has actually resulted in significant irreparable damage,” Mr Dimos tells Neos Kosmos, while pointing out the different medical treatments available to MS patients as though he were a neurologist.
He estimates that the cost of his medication amounts to $4,000 per month, paid for by Medicare, whereas the revolutionary HSCT treatment that requires a combination of steroids, white blood cell extraction, cultivation and transplant, dialysis and chemo is just a fraction of the long-term cost of other pharmaceuticals.
“What makes me angry is the fact that HSCT exists in Australia, and we live in this country, have grown up here and so much is done for us, but what they are choosing to do with MS leaves me dumbfounded,” he says. “We are forced to look overseas for treatment. So many Aussies have gone overseas for this treatment when it is available here in Australia.”
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The crash course into MS
It’s a disease Mr Dimos has come to know well following his 16-month crash course. “The only thing I knew about MS before I got it was that there wasn’t a cure and I recall, back from my high school days that there was a Readathon and they’d get people in wheelchairs to talk to us – always the worst-case scenarios,” he said.
Those school presentations were not enough to trigger any warnings when he began to feel the first symptoms of MS. “I was walking slower, dragging my foot, but I ignored these signs, dismissed them as tiredness,” Mr Dimos said. It was only a few days later at his new job as a Contact Centre Manager, when he went to pick up a pen before going to a meeting, that he found out that he couldn’t.
“My brain was telling my hand what to do but my hand wasn’t responding,” he said. He called up his wife and they rushed to hospital thinking that these were the symptoms of a stroke.
Many tests later, three neurologists gave him the news that he had MS and many thoughts flooded his mind. “What does this mean for me? Am I going to be disabled?” Mr Dimos wondered. “They tried to paint a positive picture, and told me that treatment is much better today than it was in the past, but though they told me that it was critical to see a neurologist and get advice, they wouldn’t tell me much else about my MS. Everybody is different, and everybody reacts differently.”
After the initial scare and a few internet searches later, life returned to normal and Mr Dimos began to ignore the condition, especially after a six-month MRI showed no new lesions.
But just before a holiday to Malaysia with his family, new symptoms appeared.
“I didn’t want to disappoint my family, so I said nothing and just went on the holiday hoping for the best,” Mr Dimos said. “When my vision got blurry, I blamed the chlorine in the pool.”
It was only on his return in a hospital bed in Australia that Mr Dimos began to truly fathom the seriousness of his condition that has left him with blurry vision, tiredness and the inability to taste his wife’s delicious cooking.
“The game changer for me was my son Achilles,” Mr Dimos said. “He was in hospital and he said, ‘I feel lost without dad’ and I was right there. I realised that I needed to do something. That was the wake-up call.”
Mrs Dimos says that her husband was an active dad, but could no longer last for more than 20 minutes of play time. “It was heartbreaking to watch,” she said.
“Our kids are not iPad kids and Nick could not play as he used to but he’d struggle because he’s too proud to say anything.”
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Hope and community support
After being in denial for 12 months, Mr Dimos rushed to make up for lost time. He had changed neurologists and found one who he felt spoke to him like a person rather than a patient, for the first time.
“She even told me how many lesions I had, 50 in the brain and four in the spine,” he said. “Other doctors had been reluctant to share that information with me.”
Mr Dimos also began to meet with other patients, and on his MS journey he kept hearing about the success stories of people who had undergone HSCT treatment in Russia, including a Greek Australian woman who has not only been free of her symptoms for the last five years, but has seen a reversal in her condition.
But neurologists in Australia don’t want people to travel to Russia and other countries to do treatments. “They say it is too risky, and can lead to death, and they don’t know much about it,” he said, adding that in Australia, HSCT has been available since 2012, but only for trial groups. “For a neurologist to refer you, you need to have tried three different types of MS medication and failed them all.”
Mr Dimos has failed one medication, and though neurologists say he is a great candidate for the treatment, he needs another two failures to be eligible for HSCT in the country. These treatments would take time, and HSCT would not be able to reverse the conditions caused as MS progresses creating a Catch-22 situation for Australian patients like Mr Dimos.
“I don’t want to wait for my condition to worsen,” he said. “The earlier you do it, the better the outcome.”
So Mrs Dimos created a GoFundMe page and raised more than $98,000 of the $180,000 needed in just a fortnight. Funds will help cover the flights, medication, equipment and time off from work.
“I thought that a couple of friends and family would chip in but I’ve been overwhelmed,” said Mr Dimos, a stoic man who did not share his MS story with even his close friends in the first twelve months of his illness. “I’m extremely grateful. People have been coming up to me in the street and telling me their personal stories. People I’ve never met stop me, and wish me luck. The whole community in Oakleigh has overwhelmed me.”
“The kids think he’s famous,” adds Nektaria.
Thanks to these donations. Mr Dimos will be able to travel to Russia on 24 March for the start of a journey that will include of 30 to 40 days in hospital, an isolation period of as much as a fortnight, and a healing process upon his return to Australia.
It’s his kids that give him the determination but he says he draws his strength from his wife and God.
“I feel closer to God,” he says. “You take everything for granted and things you thought were important really aren’t. Houses, cars and materialistic bullshit doesn’t count for much when you have an experience like this that puts your feet in the ground. Nektaria, she’s always been like that, but I haven’t.”
He hopes that God will help, God and a bit of kindness from the community.
To donate, follow his journey or to just leave a message of support, visit his GoFundMe page: STOP MS.ING WITH ME
