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Not many of us have the privilege to be touched in a way that forever changes you.  I consider myself one of the very fortunate ones.  I have been given a very rare opportunity to capture some really amazing families, and I am forever grateful, for each one brings something beautiful into my life.  I have had the honor of capturing joyful moments of one of life’s most challenging and heartbreaking journeys and I can tell you it has been so very humbling.

When I was asked to photograph this year’s DebRA Patient Care Conference, I knew that this would be another life changing experience and it went far beyond that.

Most people would assume that I would go into something like this feeling sadness, but that is not the case.  Aside from great anticipation, I felt a sense of peace, almost a type of joy.  Joy you may ask?  How could one possibly feel joy a midst such suffering.  I see joy because I look beyond the EB and see the truly amazing spirit of these kids and adults.   So often we focus on the pain and the suffering (which is certainly part of the reality) and we allow EB to define the person when they are so much more than that.  Just look into their eyes and you will see that they too have dreams and aspirations.  Look at their beautiful smiles and radiant light beaming, to be in their presence is an amazing gift.  Just knowing and loving these families means that life can never be the same.

Just take a moment and see for yourself….

Again, I just want to thank DebRA for giving me this incredible opportunity…it is truly such an honor and blessing.  To the EB community, my love goes out to you each and every day.  I am dedicated to be sure that your suffering, your child’s suffering will never be in vain.  I will continue to be a voice until a cure is found.

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