To the Moon and Back: Aussie dad embarks on epic 15,000km cycle to raise funds for his son’s rare genetic condition
A Melbourne dad-of-two is embarking on an epic cycle to raise funds for research into a rare neurogenetic disorder his young son suffers from.
Stu Place, 43, is covering the 15,451km distance to the US towns of Moon in Oklahoma and Back in Texas on a stationary bike from his Hampton East home.
His four-year-old son Will was born with SLC6A1, a rare and severe form of epilepsy which has no known cure, so Mr Place is hoping to raise $768,800 – $1 for every kilometre of the distance to the actual moon and back – for the treatment.
There are just 13 children in Australia with the condition that is so rare it doesn’t even have a proper name.
Will also suffers from intellectual disability, autism, is completely non-verbal and has sleep, behavioural and movement disorders.
‘It’s a real monster of a disease. Every cent raised will go directly to the Florey Institute to support the development of a life-saving treatment for SLC6A1,’ Mr Place told Daily Mail Australia.
The University of Melbourne’s Florey Institute of Neuroscience and Mental Health is the largest brain research centre in the southern hemisphere.
‘We’re hopeful that all the money raised will allow (its research) to carry on for another year or two, and they might be able to take it to clinical trials,’ he said.
Melbourne man Stu Place (pictured left) is cycling to Moon and back to help raise funds for the treatment of the rare neurogenetic disorder his young son Will (pictured right) suffers from
Will Place’s parents Vicki (left) and Stu (right) are pictured in their home in Hampton East
The mammoth virtual journey Mr Place has been on since December 1 will take 50 days, with Christmas Day marking the halfway mark and almost a quarter of a million dollars already raised.
Mr Place will still be cycling on Christmas Day, but will not be aiming for the 300km he tries to complete on other days of the week.
Extraordinarily, he is managing to do all of the cycling while still working full-time in the investment industry.
‘I’m doing at least 230km on weekdays, and then on weekends, I’m doing 250km on each Saturday and Sunday,’ Mr Place explained.
‘I’m on the bike anywhere between 7.5 to 9.5 hours a day.’
Some days he does around 300km, to make up for any shortfalls and so he doesn’t have an overwhelming amount of kilometres left to finish on day 50.
His weekday cycling starts at 4.30am and he gets around 100km done between then and 7.30am, when he heads into the city for work.
At lunchtime, he gets a couple more hours cycling done in a place he has leased close to his work.
Will (pictured with his dad) was born with SLC6A1, a rare and severe form of epilepsy
Mr Place and his wife Vicki also have an eight-year-old son called Angus.
‘I try and get home by 6.30pm, spend an hour or two with the boys, and then when they’re in bed, I jump back on the bike again, which usually takes me to about 10.30,’ he said.
‘By the time I get off, eat, prepare myself for the next morning and have a shower, I’m only getting 4.5 hours sleep most nights, except for the weekends.’
The idea of cycling to the moon and back came to Stu and Vicki about two years ago.
‘We thought that concept might resonate with parents and loved ones, so pretty much everyone. You know, we go to the moon back for our loved ones and our kids,’ Mr Place said.
‘Obviously heading to the moon was not possible. So we decided to search the globe for towns called Moon and Back and we found them both in the US, which is quite amazing.’
He didn’t just get on his bike without practice, though.
Will (pictured) also suffers from intellectual disability, autism, is completely non-verbal and has sleep, behavioural and movement disorders
‘I’ve been on a dedicated training program for about 10 months, just to try and build up to what I’m doing now,’ he said.
Mr Place said the cycling is ‘mentally and physically exhausting’.
‘It’s a lot of stress on the family as well, and my wife who at home caring for the boys and taking them to all of their school and sports activities and so forth,’ he said.
‘So she’s taking 100 per cent of the load at home at the moment.
But Mr Place said it would all be worthwhile if the virtual marathon manages to raise a decent amount of money for research into the rare condition.
‘It’s ambitious, but we’re reaching for the stars and we’re hopeful,’ he said.
Will’s seizures are mostly under control through medication.
‘He last had a round of seizures about three or four months ago as his body was growing and adjusting to different medications,’ Mr Place said.
‘So he did have a little bit of a relapse, but we were able to get back onto it, which was incredibly fortunate for us.’
Will (pictured on the stationary bike) said the cycling is mentally and physically exhausting
Though Will is not able to understand why his dad is spending so much time on a bike lately, his older brother Angus does.
‘He knows what’s going on. Probably more than I give him credit for. He’s well onto it,’ Mr Place said.
‘We had a good chat about it prior to the event about what I’m doing and why I’m doing doing it. But it’s not a typical conversation you have with an eight-year-old.
‘It’s a lot for him to digest and to register. It’s hard, because he asks a whole lot of questions about Will and what might happen and what if this doesn’t work.
‘It’s heartbreaking.’
You can contribute to the search for a cure and treatment for SLC6A1, click here.
