THE parents of five-year-old Lola Lloyd will be walking more than seven hours this Sunday (October 13) to raise awareness and funds for mitochondrial, or mito, a debilitating and potentially fatal disease that reduces the ability of the mitochondria to produce this energy.
Inspired by Lola, who was diagnosed with Leigh’s disease, a form of mito that affects the central nervous system, Lola’s mum, Kristi, and her team of 22 walkers will walk 35km across Canberra in “The Bloody Long Walk”, a national fundraising initiative for the Mito Foundation.
“We are in a team of 22 friends and family walking this weekend in admiration of Lola, and to raise funds towards research and clinical trials so no family has to go through what we are experiencing,” Kristi says.
“To save the next generation from the pain of mito, we need to legalise mitochondrial donation here in Australia.”
Mitochondrial donation (an IVF technique) is a way to prevent mito disease in the next generation of Australian children. While mitochondrial donation is legal in the UK, it is not yet legal in Australia.
Mito Foundation CEO Sean Murray says legalising Mitochondrial Donation in Australia will allow parents to reduce the risk of their children developing mitochondrial disease and will prevent it being passed on through future generations.
“Mito is a debilitating, potentially fatal genetic disorder that robs the body’s cells of the energy they need to function properly.” he says.
“One Australian child born each week, 50 children every year, will develop a severe or life-threatening form of mito.”
“All money raised this weekend will help the foundation support Australian families whose lives have been devastated by mito and will go towards funding vital research and education.”
The Mito Foundation is working closely with the Federal Government with the aim of legalising mitochondrial donation in Australia. Public consultation is now underway to obtain community views on its introduction.
To sign up to walk on Sunday, go to bloodylongwalk.com.au