Lately I have found myself thinking about what life was like a year ago…before I was really aware of Epidermolysis Bullosa, what it was, and how it impacted the lives of those who suffer from it.  I guess it was safe to say that I was blissfully ignorant.  Of course I knew that there was suffering in this world, but unless you are personally affected, many of us really cannot even comprehend true suffering, true pain.  Many people who know me personally have difficulty understanding why I would invest myself in something so tragic…so sad.
I am not sure that there is a simple explanation to why I feel the way that I do.  I always say that I am just doing what my heart is telling me I need to do, I am trusting that it is the right thing.  Honestly, it is just something I feel and some things just cannot be explained.  It is not always easy, some days can bring feelings of defeat, but then others, pure joy, pure hope. Much like the day I met Jackson Baldwin.  Oh how sweet he is!  I can still see him sleeping on his mommy’s shoulder as they came through the airport.  I wanted to cry, but all I could do was smile.  I was just drawn to his sweet face and how peaceful he looked.  I can still hear his laugh, I can still see his smile and I can still feel him squeezing my cheeks as I leaned over to give him kisses.  He is truly a precious little soul!
One look at his precious face and you are sure to fall in love!
Despite the blisters and the bandages, he manages to smile, laugh and really light up the room.   He truly shines HOPE!  Jackson will be taking part in the clinical trial that is being done at the University of Minnesota Amplatz Children’s Hospital.  To find out more about the trial, you can visit: University of Minnesota BMT Program
Please consider being a bone marrow donor it is so easy and you could be the ONE.
Jackson has a long journey ahead of him; it has only just begun.  He still needs support and help.
To learn ways that you can get involved and help Jackson please visit:

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