Alfredton youngster Skye Robson was diagnosed with the rare degenerative disorder last year, which will progressively damage her brain and limit her life to between 12 and 20 years.

Her father Mark was the former general manager of global travel company, Intrepid Urban Adventures, which has started the two hashtags #blueSkyforSkye and #hopeforSkye.

Residents around the world are encouraged to take a photo of a blue sky and share it on social media today, which is also Rare Disease Day.

Snaps have already been posted from as far away as Rio de Janeiro, Toronto, Tokyo and Kathmandu.

Mr Robson said other Sanfilippo awareness and fundraising events were a weekly Friday $10 lunch at his former base in Thailand, while his current employer, Ballarat Clarendon College, is also planning events.

“Rare diseases don’t get much research funding, so this is people-powered medicine,” he said. “We have lots of friends who can’t con-

tribute financially, but this way awareness is circulating the globe.

“Blue Sky for Skye has caught on and is passing through the Sanfilippo community and it’s giving it a real positive vibe as well. It’s so simple but it’s so cool.”

Mr Robson said he and wife

Daeng had been “blown away”

by the support they had received, particularly within

the Ballarat and Thai com-

munities. “It’s shown us a really positive side to human nature.”

People can also donate to the Sanfilippo Foundation, which is raising funds for clinical gene therapy trials, at sanfilippo.org.au/donations. A Violet Diamond Gala Ball will also be held on Saturday, May 2, at the San Remo Ballroom, North Carlton, to raise funds for the foundation. For details, contact Renee Mengler-Steel at Renee.steel@live.com.au.

fiona.henderson@fairfaxmedia.com.au