In her favourite red dress and big smile, Chloe Saxby wants to chat about kindergarten.
Like any other five-year-old she is excited about starting big school next year – the only difference is she can’t walk, can barely use her arms and has to ask her mother to blow her nose.
A few years ago Chloe was running, skipping, dancing. But an unusual genetic brain disorder called Vanishing White Matter Disease ended what was up until that point a normal childhood.
Back in March she could still scoot about the house herself on a bright green walker. But a small fall from her knees, in which she hit her head on carpet, ended her only chance of mobility. She must now rely on her mother Nyree Saxby for everything.
With each illness or bump to her head the disease claims another piece of her body, slurring her speech and making her hands shake.
A number of businesses and charities came to the Woonona family’s aid, converting the family van to accommodate Chloe’s wheelchair at a cost of $40,000. After nearly two years of lifting her daughter in and out of the car Mrs Saxby’s back gave way – a week before the converted van was delivered.
‘‘I was lifting Chloe into the car three, four times a day,’’ said Mrs Saxby. ‘‘I could feel my back getting weaker and weaker and then one day it just went and I couldn’t move for a week. I’m so grateful to all the organisations that helped us out, without the conversion I don’t know where we would be. It’s a huge burden we don’t have any more.’’
Kate Russell, from Northern Stars Swim School, helped raise $16,000 for the van, which included a fun day at the school, a silent auction and a mural made of hand prints.
‘‘All the staff pulled together for Chloe,’’ said Mrs Russell. ‘‘We’re so glad to have been able to help her, it was a privilege actually.’’
Chloe has also won the heart of Brian Cummins, from the Lions Club of Austinmer/Thirroul, who organised for $11,000 to be donated for the conversion – proceeds from this year’s Seaside Arts Festival.
‘‘Every year we look for a major cause to support around the northern suburbs,’’ Mr Cummins said. ‘‘This year – Chloe is it.’’
The Austinmer Otters Winter Swimming Club raised $5000 for the project. Other contributors included the Balls Paddock Children’s Centre and Variety NSW.
There are two scientists, one in the Netherlands and the other in Israel, who are close to a breakthrough in the disease. One scientist hoped to be able to halt the disease within three years, while the other is working on being able to regenerate the parts of the brain that causes Vanishing White Matter in five years.
‘‘There is hope for Chloe,’’ says Mrs Saxby. ‘‘We just have to keep her safe from infection and fever and any bump to the head, which can be detrimental to her condition, until a treatment is found.’’
Mrs Saxby is one of four women worldwide who has helped set up a foundation working on raising money for research into the rare genetic disorder.
‘‘What we want to do next is to set up a conference so that all the relevant scientists in the world can come together to consider a cure,’’ she says. ‘‘Rather than working separately, if we can get all of them together, we believe a cure may come quicker.’’