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.
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 he deserved -- this sadly meant that his life would soon end.
On November 8th 2009, we watched 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.
“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.
So here's the deal. Of course I want the world I live in to be free from horrible diseases like the one which took our sweet Gavin away. But what I want even more is for people to have hope -- to find hope. The real deal kinda hope that only can come from knowing that although we may never understand why horrible things happen to good people, we can find joy in knowing that each child and person here on earth carries with then a God given purpose to change our world for the better.
Go hug your healthy kid -- Thank God for the life he has given you to live and pray for the families dealing with this horrible disease.