Fiona’s 15 Minutes of Fame

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Fiona’s life: Parents, doctors powerless to save baby.

I am asking begging you to take a few minutes out of your day, your life,your time to please read this article. While we are being swamped with KONY 2012 and Invisible Children videos everywhere you turn, I ask that you take a few minutes to think locally, all the way to western Wisconsin and instead of thinking about the thousands of children suffering, think about one. Think about Fiona. Fiona will never understand that you have given her a brief chance to be in the spotlight, her 15 minutes of fame have you, but her parents will, people who I have never met but pray for all the same. Parents who are living every parents absolute worst nightmare. Fiona was born with a rare genetic disease known as GM1, and so as soon as she was born, she basically began dying a slow death that will eventually take her life almost certainly before the age 2.There are no cures, nothing to slow down this certain end, no where to run for experimental procedures or even false hope. It simply doesn’t exist. Because of her ever weakening condition, she will not be able to reach those milestones that we as parents strive to help our young babes and toddlers accomplish, walking, talking, playing small games like patty cake and peekabo. So I ask you to take a moment to gain a little perspective and truly appreciate how blessed many of us truly are. For all of my complaints I have two beautiful children and a wonderful family and after reading this late last night, instead of cursing that my six month old is still sleeping in our bed, I pulled her close and kissed her sweet head and truly appreciated how lucky I really am. Please don’t mistake this post for a pity request, I am not asking you for pity, Fiona will not benefit from your pity, nor will her parents, I am asking you to be proactive. To take this tragic story and at the very least pass it on, raise awareness about a truly tragic disease out there and if you’re truly a kindred spirit, please go to the link below and send an online letter of support to your local government for rare disease funding. So that perhaps some day fewer parents have to go through what the Kings are/will.

www.rarediseaselegislativeadvocates.org/index.aspx

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