Should $3 million be spent to save the life of a toddler?

That rhetorical question is difficulty to answer especially if you are not related to the child.

When Michael Pirovolakis was born eight days before Christmas in 2017, his green eyes glowed bright like two snow globes. He had 10 fingers, 10 toes and a full head of hair matted to his head. Michael was a cooing, crying, healthy baby boy. Terry, 39, and his wife Georgia, 41, became a family of five, tucked away in a suburb east of Toronto’s core.

Michael grew like any ordinary infant, his peanut-coloured hair becoming longer and curlier by the day. But six months into his life, it became apparent to his parents that something was terribly wrong with their son.  

His Fther, Terry says he and his wife Georgia looked at photos of Michael’s siblings and began to realize he wasn’t reaching the same developmental milestones. Michael wasn’t using his hands, didn’t crawl and hadn’t formed words. That observation led the family down countless hospital hallways, into waiting rooms and handshakes with many experts in white lab coats.

At frst, pediatricians noticed Michael’s smaller head and a “floppiness” arising from missing muscle tone. Physiotherapy was attempted and should have solved the problem, but there was no sign of improvement two months later.

Then, specialists at Toronto’s Sick Kids Hospital suspected Michael may have contracted the Zika virus from his father’s travels in South America and Puerto Rico for work.

The Zika virus an infectious disease spread mainly by mosquito bites. The symptoms and signs of a Zika virus infection may include one or more the following: flat or raised skin rash (may be itchy) Fever, chills, sweating, Joint pains conjunctivitis (red eyes), muscle aches and pains and headaches.

Back in 2016, the Zika virus had everyone's attention. In February of that year when the World Health Organization (WHO), declared the Zika virus and its suspected link to birth defects after an outbreak that began in Brazil moved to more than 20 countries in South America and central Amerca.  

Since then, the panic has quieted down—but that doesn't mean the Zika virus has been eradicated and while no new cases of the Zika virus have been reported in the United States. since 2017. it doesn’t mean that it can’t be in other countries.

Obvously Michael’s father was bitten by one of those Zika virus carrying mosquitoes.  Since he impregnated his wife, their unborn son was the recipient of the virus.  

For the most part, Zika is transmitted by the bite of an infected mosquito. But, in the past few years, it was discovered that it can also be transmitted through having sex. “This is the first mosquito-born illness that we’ve seen transmit sexually,” Dr. Adalja says. “It’s really only under that circumstance that it’s contagious.”

The irony of this case is that neither of the boy’s parents suffered from the virus as their immune systems faught the virus but an unborn baby doesn’t have a full immune system in its body, hence, the virus did its dirty work on the unborn baby.

Dr. Adalja says. “Unfortunately, there is no specific treatment for Zika virus—you kind of just have to let it run its course. “There’s no anti-viral medication and most cases are really self-limited, even when people have symptoms. Instead, it’s generally recommended that you treat the symptoms, get lots of rest, take medicine like acetaminophen to reduce your fever and pain, and drink plenty of fluids.”

s Dr. Adalja also says,  “There’s also no vaccine that can protect against Zika virus, but you can protect yourself if you travel to (or live in) in areas that are Zika-infected, or have been in the past (the CDC keeps updated information on this online), which says. “You can do this by being vigilant against mosquito bites, Dr. Watkins says—that means use lots and lots of mosquito repellent. One exception: If you're pregnant or looking to get pregnant in the near future, you should avoid traveling anywhere that's been infected with the Zika virus.” 

So far, there is no treatment for Zika virus. The Centers for Disease Control and Prevention (CDC) calls this an epidemic on the same level as that of Ebola. Because of this, there’s a lot of money being poured into quick research on vaccines and treatment options. So far, none are commercially available.

The tests for Michael didn’t stop. A neurologist said although it was nothing to worry about, the white matter that moves neural signals across Michael’s brain was  simply underdeveloped. It was another dead end, but then came genetic testing — and when the results arrived last spring, they contained the answer to every question keeping Michael’s parents up at night.

Terry said. “It was the worst day of my life. I saw on the doctor’s face that something was wrong, so they sat us down and told us what it was. It was just an acronym, but then we started reading words like ‘paralyzed, quadriplegic, limited brain function.’ I honestly don’t even know how we got home.  We curled up in a ball and cried for a couple of hours.

Michael became one of 61 people on the planet and the only child in Canada known to have spastic paraplegia 50, also called SPG50.

It’s a rare disease that will leave Michael with a progressive cerebral palsy effect in his limbs while his mind will fail like a Parkinson’s because of a missing protein in the AP4M1 gene, that is starving his son’s brain. “He’s got this double whammy of stuff happening to him right now.

Michael has suffered seizures and as he ages, his muscles will morph  to having too much, robbing him of his ability to move. His brain, too, will lose much of its  function.

Terry and Georgia didn’t waste anytime starting to scour the internet for any bit of information about the disease. They tracked down a child in Boston living with a similar condition. “For two weeks, that family took care of us,” Terry said. “We took that information and started running.”

He started flying around the world to speak with specialists and pharmaceutical companies, while attending conferences to learn how they could beat the race against time. “I asked them all the same question: ‘If this was your kid, what would you do’?”

Many of them pointed to gene therapy and researchers from the University of Texas. After Terry begged them to look at Michael, the team of specialists agreed, saying they could create an experimental therapy to try to cure his son — but it would cost $3 million.

“We’ve liquidated everything … we’ve reversed our mortgage and have taken everything out to try to save our kid,” Terry said.

On top of the money needed for the experimental treatment, Michael also needs daily physical therapy and occupational therapy, but the government says it cannot  cover all the sessions.

If the therapy wasn’t experimental, there’s a chance the government would fund it and if the condition wasn’t as rare as it is, there might be more researchers in Canada searching for a cure — but the only option is out of the country, creating another barrier for any kind of financial help.

Terry said he tried contacting Ontario Premier Doug Ford and Prime Minister Justin Trudeau, but didn’t receive any support. That shouldn’t have come as a surprise.  “Canada as a whole needs to come up with something to help parents,” he said. “There has to be a mechanism for families like us that are desperate, spending their life savings.

In my opinion, both the federal and provincial governments should fund the experiment so that |Canadians who are victims of the Zika virus can be cured.

Finding sympathy from the primeminister of Canada and the premier of Ontario is a futile  as finding a gold mine in the city dump.

As people around the world organize fundraisers, events, yard sales and even lemonade stands to help Michael,  Dr. Steven Miller, the head of neurology at SickKids, said “Terry is one of the parents leading what could be a revolution within labs movement now, especially in Canada, where researchers are working with parents to identify what the next steps are in research. As we wait for the new therapies to evolve, it’s important not to lose sight for what we can do to help kids with diseases for which there is no cure.”

Meanwhile, Terry said he spends his mornings talking to the media before going to work for the day and coming home to his family in the evening before researching online until 3 a.m. I sincerely hope he isn’t blaiming hiself for being bitten by the Zika virus carrying mosquito.