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annual trip to Louisiana

The theme for Rare Disease Day a few days ago (feb 29) was: Join us in making the voice of rare diseases heard.

In honor of that I wanted to post a few images from a project I started years ago.  The story is of my friend Nick, and inspiring man with Morquio Syndrome who I first met while taking pictures for a pharmaceutical company.  Every year I return to the small town in rural Louisiana to spend the day with his family.  This year I’ve pulled the first few years of images together on my site.

The full story will be a decade in the making.  <the gallery>

 

Portrait of a man with morquio syndrome Man with Morquio Syndrome takes a selfie with his daughterMan with Morquio bikes with his son

 

 

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