- Melbourne father Stu Place is on a 50-day virtual cycle challenge to raise money for Florey research into precision medicines for childhood epilepsy.
- Stu’s son Will, aged 4, is living with a rare and debilitating form of genetic epilepsy.
- To support this ambitious pedal-powered fundraising effort, a number of Florey staff cycled alongside Mr Place, helping to achieve the goal of 15,451 km.
Bringing new meaning to “I love you to the moon and back”
Melbourne man Stu Place is dedicated to saving the life of his son Will who was born with a rare and life-threatening form of epilepsy.
Mr Place has launched an ambitious fundraising drive to support Florey research into Will’s condition, SLC6A1, calling his campaign “A Dad’s Will: To The Moon and Back”.
“Moon is a town in Oklahoma, and Back is in Texas. In total, from Melbourne to Moon and Back is 15,451km, and we’re aiming to raise more than $760,000 to develop a new drug and get it to clinical trial,” Mr Place said.
Will started having severe seizures aged about 18 months.
“We first noticed he was missing his developmental milestones from about 6-8 months. A few weeks later we got the diagnosis of SLC6A1, which affects about one in 38,000 births.”
By the time he was 18 months old, Will was having up to 150 seizures a day.
“He also has autism, cognitive impairment, is non-verbal, and has movement and behavioural disorders,” Mr Place said, adding that wife Vicky is the real hero of the family, as she gave up work to care for Will full time.
The scariest aspect of SLC6A1 is the heightened risk of SUDEP – sudden unexpected death in epilepsy. There’s always a chance of suddenly losing our son. So, the earlier we can attack this disease with a treatment, the better the future will look for Will and others with his condition. My life is dedicated to saving Will.
When Mr Place learned that Florey researchers, led by Professor Steve Petrou, were world leaders in developing precision medicine for childhood epilepsy, he swung into action.
The cycle-a-thon started on 1 December, with Mr Place chalking up at least 230km every day, cycling before work, at lunch time, and in the evening. On weekends in his Melbourne CBD site, supporters have been riding alongside, including Florey’s Executive Director and CEO Professor Peter van Wijngaarden, as well as Florey epilepsy researchers and professional staff.
“Stu’s commitment to making a difference for his son Will and for other children with the same genetic condition is clear for all to see,” Professor van Wijngaarden said.
“It was a privilege to share time on the bike alongside him, learning about the daily challenges that Will and the family face. I am in awe of the feat of endurance that Stu has embarked on, and I am incredibly proud that researchers from The Florey are working hard to make a difference for those affected by SLC6A1.”
Mr Place said the hardest part wasn’t cycling such a long distance on an exercycle, but the lack of sleep.
“Some nights I only manage to sleep for about 4.5 hours. But this is a labour of love, and the support of the community has been overwhelming. People have come in off the street to donate. An absolute stranger came in and gave $500. It’s complete generosity.
“Every dollar raised goes towards The Florey finding a treatment, and we hope that our efforts will get that treatment to clinical trial,” Mr Place said.
Find out more about Stu Places’ fundraising mission: A Dad’s Will: To the Moon and Back
