A Melbourne father of two embarks on an epic cycle to raise money for research into a rare neurogenetic disorder his son suffers from.
Stu Place, 43, covers the 15,451 km distance to the US cities of Moon, Oklahoma and Back, Texas, on an exercise bike from his home in Hampton East.
His four-year-old son Will was born with SLC6A1, a rare and severe form of epilepsy for which there is no known cure. That’s why Mr Place hopes to raise $768,800 – $1 for every kilometer of the distance to the actual moon and back. the treatment.
There are only 13 children in Australia with the condition, which is so rare it doesn’t even have a proper name.
Will also has an intellectual disability, autism, is completely non-verbal and has sleep, behavioral and movement disorders.
‘It’s a real monster of a disease. Every penny 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 center in the Southern Hemisphere.
“We’re hopeful that all the money raised will allow (the research) to continue for another year or two, and maybe they can do clinical trials on it,” he said.
Melbourne’s Stu Place (pictured left) cycles to the moon and back to raise money to treat the rare neurogenetic disorder his son Will (pictured right) suffers from
Will Place’s parents Vicki (left) and Stu (right) are pictured at their Hampton East home
The gigantic virtual journey that Mr Place has been on since December 1 will last fifty days. Christmas Day is half way through and almost a quarter of a million dollars has already been raised.
Mr Place will still cycle on Christmas Day but will not aim for the 300km he tries to cover on other days of the week.
It’s extraordinary that he manages to do all the cycling while still working full-time in the investment industry.
“On weekdays I do at least 230km, and at weekends I do 250km every Saturday and Sunday,” Mr Place explains.
‘I ride my bike about 7.5 to 9.5 hours a day.’
Some days he covers around 300km to make up for any shortfalls so he doesn’t have an overwhelming number of miles left on day 50.
His weekday bike rides start at 4:30 am and he covers about 100 km between then and 7:30 am when he goes into town for work.
At lunch he cycles for a few hours at a place he has rented near his work.
Will (pictured with his father) 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 to get home around 6.30pm, spend an hour or two with the boys and then when they’re in bed I hop back on the bike, which usually gets me around 10.30am,” he said.
‘By the time I get out, eat, get ready for the next morning and shower, Most nights I only sleep 4.5 hours, except on weekends.’
The idea to cycle to the moon and back came to Stu and Vicki about two years ago.
‘We thought this concept would resonate with parents and loved ones, so almost everyone. You know, we’re going back to the moon for our loved ones and our children,” Mr. Place said.
‘Going to the moon was obviously not possible. So we decided to look around the world for cities called Moon and Back, and we found them both in the US, which is pretty amazing.”
However, he didn’t just get on the bike without practicing.
Will (photo) also suffers from an intellectual disability, autism, is completely non-verbal and has sleep, behavioral and movement disorders
“I went through a special training program for about 10 months just to try and build up to what I’m doing now,” he said.
Mr Place said cycling is ‘mentally and physically exhausting’.
‘IIt is also a big stress for the family, and for my wife who takes care of the boys at home and takes them to all their school and sports activities and so on,” he said.
“So she’s currently taking 100 percent of the load home.
But Mr Place said it would all be worth it 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 attacks are usually controlled by medication.
“He last had a seizure about three or four months ago while his body was growing and adapting to different medications,” Mr Place said.
“So he did have a bit of a setback, but we were able to get back on track, which was incredibly fortunate for us.”
Will (pictured on the exercise bike) said cycling is mentally and physically tiring
Although Will doesn’t understand why his father has been spending so much time on his bike lately, his older brother Angus does.
‘He knows what’s going on. Pconsiderably more than I give him credit for. He has it figured out,” Mr. Place said.
‘We had a good conversation before the event about what I do and why I do it. But it’s not a typical conversation you have with an eight-year-old.
‘It’s a lot for him to process and register. It’s hard because he asks a lot of questions about Will and what could 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.