The Chloe Saxby story on World Rare Disease Day.. Support her fundraiser at Northern Stars Swim School in Russell Vale this Saturday
Today is World Rare Disease Day & unfortunately the Illawarra isn’t immune. This morning Jade & Travis spoke to Nyree Saxby, the mother of 4-year-old Woonona girl Chloe. Last year Chloe was diagnosed with incurable Vanishing White Matter disease of the brain. Chloe’s condition is degenerative, the life expectancy of sufferers is 5-10 years. Researchers in the Netherlands & Israel believe they’re close to finding a treatment but not a cure. They hope to begin human trials in 3 years & Chloe is on the list to get that opportunity. All week, the team at Northern Stars Swim School in Russell Vale have been running a fundraiser to help the Saxby family pay for the changes required to house & get Chloe around with a wheelchair accessible car. On Saturday March 2 between 9am-12pm at fundraising morning will be held at Northern Stars where Chloe’s Tree of Life & Underwater murals will be unveiled (you can see the pictures below)
For mobile devices download our chat with mum Nyree HERE
Vanishing white matter disease (VWM) is one of the most prevalent inherited childhood leucoencephalopathies. The classical phenotype is characterised by early childhood onset of chronic neurological deterioration, dominated by cerebellar ataxia. VWM is unusual because of its clinically evident sensitivity to febrile infections, minor head trauma, and acute fright, which may cause rapid neurological deterioration and unexplained coma. Most patients die a few years after onset.
For more information on Chloe’s story go to her website