Dean Kizi set himself a goal: to travel to 30 countries before he turned 30.
At the age of 29 he had completed that mission. By that time, the Sydney-based designer was newly involved in his now-wife Anda, had a master’s degree in architecture and was the owner of a flourishing company. Life was, as he says, “great.”
“We had just bought a house and I was renovating it myself,” explains Dean.
‘At the same time I thought it was great to go to the gym. I would often work to complete muscle fatigue. Moreover, I was a young guy who played hard at the weekend to play hard. ‘
As a result, when Dean started to experience a number of physical peculiarities, he was quickly to reject them as normal wear.
“I noticed that sometimes I got a bit awkward,” he adds.
‘I would roll on my ankle, and after a Boozy -night I would limit a few days. I had also started to vibrate a lot – but as a young guy in the gym, muscle twitches was quite everyday. ‘
Although he initially explained these symptoms, an experience while working at the house one day did him pause.
Dean is depicted with wife Anda for his diagnosis
“I received a phone call from a geneticist and he asked me to come and see him – but it’s never good news if you get a phone call from a doctor,” says Dean
“I realized that I couldn’t stand on the toes of my right foot,” he remembers. “I just couldn’t manage it.”
A phone call with a family friend who was a physio led the dean to make an appointment with a neurologist.
“She told me it was something more serious than just muscle injury if I couldn’t stand on my toes. So then I went looking for answers. ‘
But those answers would not be easy.
“I saw everyone, from neurologists to kinesiologists. She saw every kind of “ist” that you can imagine, “says Dean.
For four years, Dean would be incorrectly diagnosed with various disorders, including Lyme disease, multifocal motor neuropathy and ‘nerve disorders caused by the flu’.
But treatments did not work and Dean’s symptoms progressed, albeit slowly.
‘I spent a lot of time consulting Dr. Google at this time, “says Dean,” and I came across the brain and spirit clinic that Professor Matthew Kiernan worked on. “
It was finally here that Dean was definitively diagnosed – eventually via a simple, bulk -beak blood test.
“Some of the physical things that ordinary fathers can do, I can’t do,” Dean reflects on raising his six and two-year-old daughter with mnd
‘We want to build a house, and I want to ensure that they can live well in the next 30 years’
“Under Matthew’s care we have undertaken a simple blood panel that came back with a hit,” says Dean.
“I received a phone call from a geneticist and he asked me to come and see him – but it’s never good news if you get a phone call from a doctor.”
The geneticist inquired that the diagnosis of motor neuron disease (month) was – “confirmed via a rare SOD1 mutation, this specific gene that Dean wore only in about five cases was documented in Europe.”
“Dean has a family form of motor neuron disease, associated with a genetic mutation that causes degeneration of the brain’s engine system, which leads to paralysis of voluntary muscles,” explains neurologist Professor Kiernan, who won the GSK prize for research -outness as a result of his pioneering exit.
“As a result of neurological assessment, brain image with MRI, neurophysiological research and genetic tests, we were able to achieve the specific diagnosis for him.”
Dean says he was too overwhelmed at the time to properly process the news that he had a terminal diagnosis.
“Prior to the diagnosis, I remember that I couldn’t sleep because I googled my symptoms and would pop up,” he says.
“It made me terrified then and still does it. Thirteen years later I still don’t know how to process the information, and I still can’t sleep because tomorrow is not nice for people with mnd. ‘
In the same appointment, the geneticist also asked Dean and his wife if they want a reference to a fertility specialist. Because Dean’s mnding could be traced to a genetic mutation – can only be 10 percent of the cases – it was possible for the couple to have children who would be born free of mutation through gene -selective IVF.
“We didn’t even have to discuss it, we both immediately said yes,” says Dean. “We knew we wanted a family.”
And so, while he still processes the news of his devastating diagnosis, Dean and Anda went on the path of IVF.
‘It is really difficult for couples in general, but was particularly difficult for Anda. It is difficult for the body, “Dean recalls.
Experiencing setbacks and failed attempts, navigating what life looked like with a degenerative disease, was incredibly challenging for the couple. Fortunately, Dean says, they are both mentally strong.
At the same time, Dean strived for innovative new treatments for his form of month – initially only approved in Japan. He has been working for eight years now and currently has an infusion of the medicine in the hospital every morning at a two -week cycle after/two weeks.
“One of the good things about having the genetic mutation that I do is that all treatments for MND are based on the SOD1 mutation, because it is what the scientists use to inject the mice on which they test,” he explains, “so that way I know that the drugs have been specifically developed for my type of state.”
And then, finally, the IVF process was successful and welcomed Dean and Anda daughter Alexa six and a half months ago.
“It was just pure joy when she was born,” says Dean, adding that the birth of his second daughter Aria was ‘the last part of the puzzle’ two years ago.
And while parenting with a degenerative disease has its challenges, Dean is dedicated to pour so much love and wisdom into his children as long as he can.
“I can’t do some physical things that ordinary fathers can do,” he tells me.
‘I am lucky that my form of month is slowly running out, and I can still walk and come around, but children want to walk their father’ shoulders walk through the stores, they want to be spun all around. I can’t do that. ‘
Desperate to ensure that his family is well privileged, Dean says that life is now about balancing the need to work and create a stable future for his girls, and to spend as much time as possible with them while navigating the challenges of his condition.
“We want to build a house and I want to make sure they can live well in the next 30 years,” he says.
‘My role is only to live them through life, to teach good manners, morality, knowledge and to give them the skills they need to be independent to live without me. I think that is your role as a parent to teach your child independence. ‘
“They are children, but they are damn smart,” he continues.
“They absorb everything. I believe that the early years are the real basic years for people in general, so at the moment I am a lot of time, because I don’t know how much time I have left. ‘
Dean, whose general positivity and resilience come through in every aspect of his approach, is resolutely philosophical about even this reality.
“You know, you may have an infinite amount of time, and that is still never enough time with your children or your family,” he reflects.
“While I’m still here, I’m going to let it count.”
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