Chloe Saxby has struggled for six years with a degenerative brain disease, but thanks to her family’s efforts a cure may be on the horizon.
With the support of the Illawarra community, Grant and Nyree Saxby have raised more than $900,000 for research into Vanishing White Matter disease – a terminal condition affecting just seven Australians.
The latest fundraising effort, Ride for Chloe, will kick off on Sunday morning when 22 cyclists will leave Melbourne to travel more than 1000km to Wollongong.
One of those riders is Mr Saxby, though the idea for the fundraiser came from two Melbourne men who didn’t even know Chloe. Richard Turner and Ged Walsh came across her plight on social media.
‘’We’ve done previous rides to raise money for other charities and when we heard about the rarity of Chloe’s disease we really wanted to help out,’’ Mr Turner said.
‘’We came to Wollongong – where I was born and bred – to meet the family, and were just amazed by the determination of both Grant and Nyree given what they’re facing.
‘’Grant jumped on board to ride with us and we’ve already surpassed our $100,000 fundraising goal, with around $138,000 raised before we even start.’’
Nine-year-old Chloe was just three when she was diagnosed – and every day her family lives with the knowledge that her life expectancy is likely between five and 10 years from the onset of the disease.
In 2016 the Saxby’s launched the Saving Chloe Saxby campaign to raise $2.6 million to fund research by teams in Israel and The Netherlands.
Mr Saxby said the progress of recent breakthoughs had been hampered by lack of funding.
‘’There’s been some positive results and we feel a cure is very close but it’s a race against time to save Chloe and the research teams need more funds for specialised equipment,’’ he said.
‘’It’s been amazing how so many people in the Illawarra and beyond have got behind Chloe and supported this campaign – but we need to keep going.’’
It’s going to be a tough ride – especially for Mr Saxby who has never cycled for more than 20km at a time previously. ‘’We’ll be doing over 150km per day for six days so I’m a bit nervous,’’ he said.
‘’But I see Chloe in pain and struggling every day, and so she’s my inspiration.’’
I see Chloe in pain and struggling every day, and so she’s my inspiration.Grant Saxby
For details or to help out visit www.rideforchloe.com