DIPG/DIPT Discussion

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Saturday, March 30, 2013

Miette- Sweet Little Crumb

She loved princesses as well as castles, faires and all magical things .

She loved animals- giraffes, elephants and kittens.

She was sweet, courageous, thoughtful, light and bright.

Miette's gorgeous blue eyes, impish smile and golden locks hid a fatal tumor.

Her parents were determined to tell her story from the beginning to the end.  The beginning started on July 25th 2011,  when 5-year-old Miette was diagnosed with a brainstem tumor.   The next day her parents were told there "with radiation there would be a 50% chance she would be here in 1 year and a zero percent chance in two." The end came this week on Tuesday.   Australia's Sweet Little Crumb left this world.

A special thing on this journey- Chicken Mick and his band of merry helpers.   This "big hearted Aussie bloke"put together a Wiggly Whirlwind Weekend sending Miette to Melbourne to meet the Wiggles.  

The story didn't end there though.  They were met by a TV crew at the airport on the flight home and taken home in a fairy pink Hummer.   Although they had agreed to a "lick of paint on her cubby" while they were away and told Chicken Mike that Miette liked animals,  they were not expecting what waited at home.    The front yard was transformed into a little farm and her cubby into an "area fit for a princess".   Here is the story in their own words...

or better yet watch this special video.....

Because of Miette, the Wiggles are now ambassadors to raise awareness of through the Isabella and Marcus Paediatric Brainstem Tumour Fund.  Both Isabelle and Marcus died from DIPG.  The two families started this foundation with the mission to fund Australian research into pediatric brainstem tumors with a focus on DIPG.   Miette joined in with her support making hairclips and bands, selling them online and giving 50% of the proceeds to the charity.

A vision of the  foundation is "to established an Endoswed Chair at the Univeristy of Melbourne, with an affiliated research laboratory in the Victorian Comprehensive Cancer Centre that will perform research to understand the nature of these tumors, develop novel treatments and to participate in international clinical trials."

Miette you will be remembered.

Miette's Journey- http://www.miettesjourney.com/

Chicken Mick-

Isabella and Marcus Paediatric Brainstem Tumour Fund- http://www.isabellaandmarcusfund.org.au/index.html