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Mike Tozer was well into his 30s by the time he caught the running bug. Before long, he was hooked.
"Something about the way I've been made, I just really love running," Mike says. "Every 10 days I have a day off in my training schedule and I can be a little grumpy on those days when I haven't gone out and run."
Mike says running brings him a lot of joy. But when he first started training along the Charles River in Boston — while working on his Master's degree at Harvard — Mike had no idea that running would soon help him make sense out of his family's biggest challenge.
A Frightening Diagnosis
During those first few months of running along the Charles River, Mike didn't yet have a name for that challenge. All he knew was that something seemed to be wrong with his newborn son, Josiah. Mike's wife, Helen, has a background in early childhood development. And Mike says she's the one who first noticed the signs.
"He wasn't meeting milestones, even in the first few months," Mike says. "In fact, when he was born he came out with his eyes closed. Whereas his sister, her eyes were bright, wide open. The doctors told us, to start with, 'Oh, maybe he's just, he's a boy, he's going to be slower.' But the more questions she started asking, the more the doctors realized that something was going on."
It took 18 months of testing for doctors to put a name to that "something:" Fragile X Syndrome — a genetic condition that causes cognitive delays, learning difficulties and behavioral challenges. It's the number one cause of inherited intellectual disability and the most common known single gene cause of autism.
"And yet we'd never heard of it before when he was diagnosed," Mike says.
Mike had been reading about all sorts of fatal genetic conditions on the internet, and he was relieved to learn that his son would be able to live a long and happy life.
Mike and Helen moved back to Hong Kong — that had always been the plan once Mike got his degree — and started a small non-profit — a community to support families living with Fragile X.
And then, as the next logical step, Mike Tozer put on a custom-made bright blue business suit and a pair of even brighter yellow sneakers and got ready to run a half-marathon. Wait, what?
A Reason To Run
"In some ways it's all happened step by step, it seems to make a lot of sense," Mike says. "But it's only at times like this when I step back and realize, yeah that needs some explaining. It first started when a friend's friend has just broken the world record for the fastest half in a suit. And at that time it was 1:35:00. That was the record. And I thought, 'Wow, I've just run 1:16:00, that's achievable for me.' Then probably about two months later it got broken again. And then that second guy, he said in one of his interviews, he mentioned the fact that running with a suit was kind of like a cognitive dissonance. His brain was going, 'You're hot, you're hot. Take off the jacket. Take it off.' And yet the other half was saying, 'You've got to keep it on. You've got to keep it on the whole way.' And that really made me think about Fragile X."
Okay, this needs some more explaining. Running a half-marathon in a business suit reminded Mike of Fragile X in two ways.
First, people with Fragile X can't produce one particular protein. It's called FMRP. And that one missing protein causes problems related to brain development.
For Mike, that was like the suit. Wearing the suit was just one, apparently small, difference from the other runners in the half marathon, but the suit made the runner hot, it made it hard for him to move, it got wetter and heavier as the race went on. It caused a lot of different problems.
And then there was that "cognitive dissonance." Mike compares that to the social component of autism. He says his son really, really wants to engage socially. But he can't. Much like the runner in the suit can't take his jacket off, no matter how overheated he gets.
"That was the double seed that really sowed it in my mind," Mike says.
The Man Best-Suited For The Job
So Mike went to a local tailor and had a special suit made. The tailor made sure he had a little extra room in the hips. All the pockets except one are fake.
"They did a shorter cut, so it's just above the ankles — a bit less material," Mike saus. "But other than that it's a real suit. It's one, as I'm showing today, can be worn to work."
Mike sent us a picture of himself in the studio in Sydney, where the family now lives — just to prove that he really did wear the suit to work that day.
"But like life with Fragile X, you pick yourself up quickly, and my wife said, 'You've got one more attempt. This is it. You gotta make this work or we're going to retire the suit.'"
Back in May, Mike put on his brand-new, bright-blue suit and lined up for the start of the Sydney Morning Herald half marathon. Mike isn't used to a lot of attention when he runs. But, you know, the guy running in a business suit is going to get noticed.
"Even police were kind of turning into the race and shouting 'Go suit man!' Cheering me on. And all that attention kind of went to my head and I went off way too fast at the start of the race," Mike says.
Mike thought this burst of speed was great. Helen knew better.
"And at one point she was yelling at me that I was going too fast. And I thought, 'I'm still quite confident at the 6, 7k mark that I'm on for the record,'" Mike says. "But in the second half of the race, the sun was rising and I just felt like I was running with this very, very heavy piece of material that was pulling back and down on my shoulders. And I started to drop away from the runners that I was running with. My morale dropped and I felt the record slipping away from me."
Mike missed the record by 27 seconds.
"It was, yeah, it was a disappointing moment," Mike says. "But like life with Fragile X, you pick yourself up quickly and, and my wife said, this was such an endeavor for our family, she said, 'You've got one more attempt. This is it. You've gotta make this work, or we're going to retire the suit.'"
A Second Shot At The Record
So Mike trained harder. He got a coach. He doubled down.
The whole time, Mike wasn't really sure whether Josiah knew what he was trying to do for him — and other kids living with Fragile X.
"He understands a lot more than he's able to say," Mike says. "He can say, 'Daddy running.' But, yeah, but I think he'll get there. His sister, she's the one that always gives me a lot of banter. She's only seven but she said to me the night before, 'Dad, remember. Go slow in the first half. Then fast in the middle. Then speed up when you see the finish line.' That's her advice. Basically the same as an Olympic-level coach, she is."
Just 11 weeks after his first attempt, Mike put on the suit again for his second and final try. This time, Mike tried to ignore all the attention. And he ran, and focused on what he was there to do.
"There was moments that I was thinking about my son, thinking about other families I know that are affected," Mike says. "There was a really sad story in Sydney of a family that, a Fragile X family that were involved in a car crash, where the dad just — life was just too much for him and he ended up taking the lives of three of his family members in a car crash. So there was a moment in the race where I was just suddenly thinking, 'Yeah, there's just so much pressure on dads, particularly those affected by special needs.' Yeah, in a way I was running for them as much as I was running for myself and my son."
But soon this second race started to seem a lot like the first race. Helen was cheering him on again. And again, she wasn't happy.
"She was yelling at me and looking at me, watching, realizing that there was literally going to be seconds in it, and I really had to pick up the pace," Mike says.
Mike did pick up the pace, and he entered the stadium for the final lap with about a minute to go — at least on his watch.
"And I thought that I was pretty comfortable — you know, gonna cross the line. But as I rounded the final straight, I looked at the clock, and I knew I had to cross the line before 13 seconds," Mike says. "And as I crossed the line the clock went from 13 to 14. And I thought, 'Oh no I haven't done it. Oh no, all that effort. This was going to be my last attempt and I haven't done it.' And then I went over to check with the time keeper and he pulled up my time and he said, 'Yup, you did it by three seconds.'"
Mike had been looking at the wrong clock. There was a full marathon going on at the same time, and the clocks for the two races were just a few seconds off. After feeling the disappointment of thinking he hadn't set the record, Mike was now beside himself over the fact that he had.
"I was just overjoyed," Mike says. "I spun around and almost knocked over the flatscreen TV that was showing the results behind the timekeeper in my excitement to find my wife and give her a hug."
Mike did find Helen, and he did give her that hug. But Josiah wasn't able to be at the finish line. He wasn't able to come to the race at all. The effects of Fragile X make it difficult for Josiah to be around large crowds and commotions. So he stayed home.
But, Mike says, Josiah really is doing well.
"He's just a lovely kid with a great sense of humor," Mike says. "As I've shown and as he shows on a daily basis, you know, even with things holding you back you can really excel."
Mike Tozer is still waiting for Guinness to certify his world record. But while he waits, he's noticed that there's also a record for fastest marathon in a suit. That one stands at three hours, which Mike says, just might be within his grasp.
This story aired on September 3, 2016.
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