Sunday, September 19, 2010

{Mito Awareness Week Begins}

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Did you know that this week in September in Mitochondrial Disease Awareness week? Most likely the answer is no -- not because you choose not to care, but rather like so many other rare diseases you’ve just never been exposed to this life -- this reality.
I remember back in 2005 when my little girl Madison was born.  My world was filled with nothing but thoughts of my sweet baby and the life that she would live.  I loved watching her grow -- hitting her milestones and making mommie and daddy so proud.  
I never realized that while we were living in our healthy world other parents were watching their children die.
It’s a harsh reality.  When you enter the world of degenerative and terminal disease, it’s like stepping in an alter reality -- where everything that you once knew to be right and logical, somehow gets turned around.  It’s a world filled with suffering, dreams never fulfilled, and futures never lived.

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In 2008, when our son was diagnosed with Mitochondrial Disease it was sadly to late.  We were told that the disease had progressed to the point that there was nothing more that could be done.  Our team of doctors switched focus over from searching for some kind of treatment that would work to giving our little boy the quality of life is deserved -- this sadly meant that his life would soon end.
On November 8th 2010, we watching the Mito take over his little body.  Although nothing can take away the pain of loosing our sweet Gavin, the thought that our son was no longer fighting this horrible monster brought peace to our heart. The monster of Rare Disease is big -- bigger than any child or adult should ever have to fight.
Gavin was 3 years old. 
Before I entered this crazy life I never realized that doctors actually utter those words, “there is nothing I can do.”  Most of us assume that if we take our children to the Hospital they will be fixed.  Sadly so many cures are yet to be found.

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“There are currently just over 7,000 rare diseases identified, affecting 30 million people in the US alone. Although these numbers are staggering, what is of even greater concern is that approximately 75% of those affected are children, making this disease category one of the most deadly and debilitating for our country’s children.”
But there is hope.
The Global Genes Fund has been accepted to participate in the Pepsi Refresh Project, September 1 – 30 in the category amount of $250,000. Money raised through Pepsi Refresh Project voting contest will help build a funding platform to help speed-up rare disease research by easily connecting rare disease groups and foundations with financial supporters.

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There a millions of children still fighting right here in our country.  
Click here to vote or text 102614 to Pepsi (73774)

1 comment:

Phyllis said...

So true Karen. Libby wanted to look at her baby book tonight but it is so bittersweet. We just didn't know how fortunate we were then to have a healthy "typical" child. Thanks for helping to raise awareness for the rare disorders that are still affecting our children.