Extraordinary Measures Inspirational Quilt – Help Niemann Pick Type C Families Win 10K prize By Voting Today
January 16, 2010 by Chris Hempel
Filed under NPC Family Stories
Five families with children suffering from Niemann Pick Type C disease have posted their touching videos on the Extraordinary Measures Movie’s Inspirational Quilt. They are running a contest on the movie’s website and the winner of the video contest will win $10,000 to be donated the charity/foundation of choice. The chances of winning increases with the number of votes the family receives. The Hadley’s and Hempel’s have also posted our videos — please vote for all videos and we all will be entered into a larger pool to win the $10k prize.
Hadley Hope Video – http://extraordinarymeasuresthemovie.com/?videoId=212
HempelFamily Video – http://extraordinarymeasuresthemovie.com/?videoId=193
I really love the words to the song written for Elise Marie Barton, a little girl who suffers from Niemann Pick Type C disease like Addi and Cassi. You can watch the video here – http://extraordinarymeasuresthemovie.com/?videoId=201 – and vote to help all NPC kids.
‘Elise Marie’ by Billy Johnson (Album: ‘It’s a Good Life’ – 2009)
I know a girl named Elise Marie
She’s a baby, she’s just three
Though she’s got a real bad disease
She’s as courageous as she can be
I know a girl sweet like a cherub
Big beautiful eyes
She got skin like porcelain
And a sweet, sweet smile
I know a girl, life ain’t easy
But she got the love of so many people
I know a girl gonna keep on tryin’
Cause hope is on the horizon
Hope is on the horizon
Hope is on the horizon
I know a girl, tough as nails
She take a hit like a champ
She might stumble, she might fall
But she get back up again
I know a girl, life ain’t easy
But she got the love of so many people
I know a girl gonna keep on tryin’
Cause hope is on the horizon
Hope is on the horizon
Hope is on the horizon
Hope is on the horizon
I know a girl named Elise Marie
Love will last for eternity
I know a girl named Elise Marie
Love will last for eternity, for eternity





