Tuesday, March 13, 2012

Butterfly Children

1st Dibs

Okay, I barely ever do this, but this is too important not to share, so we are taking a short break from design to share this journey. This past weekend, I went to NYC to run a 5K: "Rafi's Run". Rafi is a very special little girl - she is the daughter of very good friends of ours and was born with an extremely rare genetic disease called Epidermolysis Bullosa, or EB for short.   It is quite literally "the worst disease you have never heard of".  EB children are missing a protein and therefore their skin blisters at the slightest touch.  Wearing a simple t-shirt with seams can cause untoward skin damage hence these children have been nicknamed "Butterfly Children" because their skin is so fragile. 

Help us find a cure for this horrific disease by donating today. No child should ever have to live with this burden. If you would like to learn more about Rafi's journey and stem cell transplant, you can read their blog Rafi's World.

Here we are after the run - that's Rafi in her Daddy's arms (Brett Kopelan). That's me on the right and my dear friend and running buddy Wendy Corbin is on the left.

We love you Rafi!!!!


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