The last day and a half have been a lesson in patience after I injured my right hand and found myself in a splint bandaged up to my elbow. Accidents happen. Just try not to let them happen to your dominant hand if you can help it. In the scheme of things, it’s not such a big deal. These are temporary inconveniences. A week or so and my life will return to normal. And yet, it surely puts things in perspective.

I want to tell you about an upcoming event in honor of an extraordinary girl for whom the day to day normal requires a bravery I can’t imagine. Five year old Rafeala, Rafi to her friends, lives with Epidermolysis Bullosa (EB), a rare genetic disorder that keeps the outer layer of skin from binding to the layers beneath. As Rafi’s family explains it, “Think of Rafi’s skin as Velcro. Velcro has latches that intertwine and hold the two pieces together… Rafi does not have those latches.”

With skin as delicate as a Monarch’s wings, those with EB are sometimes called Butterfly Children.

My aunt’s friend Wendy recently shared Rafi’s story, and her family’s incredible journey, with me. Their children go to school together, and she told me “though she comes to class in gauze bandages from neck to feet, she has hardly missed a day of school this year. Rafi is an inspiration.”

I began to read, to try and comprehend, life with EB.

Imagine having your entire body wrapped in bandages as if they were a third layer of skin. Imagine having to undergo a daily bath and bandage change that lasts about 2 hours and is incredibly painful. Think about the last time you had an abrasion and got into a shower. Now think about having up to 75% of your body as an open wound.”

This is Rafi’s normal. I now see why it’s referred to as “the worst disease you never heard of.”

Let’s make it one everyone’s heard of as they strive to find a cure.

Sunday, March 10, 2013, the second annual Rafi’s Run 5K and children’s fun run will be held in New York’s Riverside Park.

Whether or not you’re in NYC next month, you can help Rafi, you can help all the Butterfly Children, by raising funds and raising awareness of EB. All proceeds will go directly to researchers at DebRA (Dystrophic Epidermolysis Bullosa Research Association of America), seeking a cure for the 1 in 50,000 Americans born with this genetic disease that doesn’t discriminate by gender, race, ethnicity, and can occur where “there is no family history… as the result of a spontaneous genetic mutation.

If you are local, here’s information to register for Rafi’s Run.

If you’d like to donate, here’s information to help do so.

If you can use your social media platforms to spread the word, please tweet or post this link or one to the Rafi’s Run site: http://www.rafisrun.com. Follow Rafi’s journey on Facebook and Twitter.

Let’s bring Rafi’s Run all the attention it deserves.

Let’s use social media to promote social good.

Be the change. Blog the change. xo a

 

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3 thoughts on “Rafi’s Run: The Journey To Cure EB Begins With A Single Step

  1. Wendy Stetson

    From all of us who are lucky enough to know Rafi, thank you thank you thank you! While the rest of her class went ice skating with their 4th grade buddies, Rafi spent Friday talking to the 6th, 7th and 8th graders at her school about EB and Rafi’s Run. She is one incredible kid!

    Reply

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