After several decades carving out a career as a singer in the music industry, on Sunday October 1st 2017, facing impending personal tragedy Sandee Facy the songwriter was born. In the space of six hours Sandee wrote and recorded the song ‘Hummingbird’ to honour a beautiful young woman named Natalie, a close family friend who was losing her battle to the devastating life threatening genetic disease Cystic Fibrosis.
Tragically later that same day, Natalie the source of inspiration for the song passed away just shy of her twenty first birthday.
“What was truly transformational for me was writing a song from my heart and soul. Natalie’s spirit was to me like a Hummingbirds wings fluttering like magic to a better place to shine, flowing free of time. Natalie’s grace has shown us all how to be alive. These words feature in the lyrics” said Sandee Facy singer/songwriter.
At first Sandee thought the purpose of the song was to comfort Natalie’s family, but has since realised there’s an even bigger purpose. According to Facy “ the song ‘Hummingbird’, Natalie’s song, is going to be used as a fundraising platform for Cystic Fibrosis, to heighten awareness of the urgent need for lifesaving medication Orkambi to be listed on the PBS here in Australia and to help find a cure”.
There are over twelve hundred people with Cystic Fibrosis, waiting to access the ground breaking medication Orkambi that treats the underlying cause of CF not just the symptoms. The medication has been rejected at three previous meeting submissions to the PBAC. The fourth and final submission for listing will be made in June, and if rejected may mean the pharmaceutical company that manufactures Orkambi could leave Australia jeopardising access to Orkambi, future medications and trials for people with CF.
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