“One day she was running around, swimming and dancing, like any other young girl, and the next she was unable to walk and in the first stages of losing her motor functions.”

It’s a tragedy you hear about on the news and hope it never finds its way into your life. Until one morning you wake up to find it very much a part of your reality.

That’s what happened to Virgin Australia employee, Nicole Laurie, four years ago when her then three-year-old niece was diagnosed with a rare, terminal brain disease called Vanishing White Matter Disease.

13091912_10153938724450395_1467474118269503602_n

Laurie says the disease crept up overnight, taking away the Chloe Saxby’s healthy, active and happy childhood before eventually taking away her ability to walk and sadly maybe one day, her young life.

What the little lady has been diagnosed with is so rare that there have only ever been seven cases reported in Australia and 170 worldwide.

13340587_10154214265784666_1764272890_o

Not much is known about the disease except that there’s currently no cure and there’s no financial assistance available to fund promising research that could stop the disease in its tracks.

It’s up to Laurie and her family to find the money to take research to the next stage leading to pre-clinical trials, but it’ll cost around $2.6 million.

13321162_10154214838209666_1815038199_o

So far, the family has organised everything from running marathons to Bunning’s BBQ’s, but the money isn’t coming in fast enough – Chloe’s life expectancy is between five- to- 10 years from diagnosis.

“So for the past year I have been working hard each night on a campaign ‘Saving Chloe Saxby’, which we launched on World Rare Disease Day, 29 February.”

Nicole Laurie, Virgin Australia Travel Industry Account Manager

“Saving Chloe Saxby has received a considerable amount of media exposure, with Chloe’s story appearing on National Nine News, Channel 7’s Sunrise, WIN TV, Sunday Telegraph, News.com, Woman’s Weekly aswell as local Wollongong media.”

FullSizeRender

Around $200k has been raised in three months.

To help boost that figure, Laurie is asking the industry to get involved in another fundraising initiative called the Rainbow Challenge.

The idea is to spread awareness for Saving Chloe Saxby to all corners of the globe, whilst raising these lifesaving funds at the same time.

Travel Industry Rainbow Challenge

To get involved you simply need to take a photo with the SavingChloeSaxby.com rainbow, which can be downloaded from the Saving Chloe Saxby Facebook page under ‘events’ (or click here to download it).

Post the picture on Facebook or Instagram, using the hashtag #SavingChloeSaxy.

Donate $5 at www.savingchloesaxby.com and then tag and nominate five others for The Rainbow Challenge to spread the rainbow word.

Check out the flyer above for more information.

Will you join the Rainbow Challenge?