As Long as She Needs to Be Held

I remember very clearly the moment I read the email.  Two days after Bean’s birthday last August I was sitting on a bench at a playground in Riverside Park.   Bean was climbing and sliding.  I was most likely sipping some iced coffee drink or other.   The email’s subject read simply “Hello [Bean’s New School] Parent.”  What followed was a message to all the incoming kindergarten parents from a fellow family.  They wrote to share how excited they were for the start of the school year and also for us to meet their daughter Rafi.  Rafi, they said, has a rare genetic disorder called Epidermolysis Bullosa that makes her skin extremely sensitive and fragile.  The slightest friction or even excessive heat can cause it to tear and blister.  As a result she has many “boo boos” which are covered with bandages both to protect them and to facilitate healing.  The letter was thoughtful and positive.  Rafi’s parents shared how aside from her EB, she is much like any other almost-Kindergartener.  She loves to play and to draw.  She has friends and has been to preschool.  She is funny…

And as I sat there on the bench, watching my brand new five year old leap and run, roll and twirl, my heart just kind of went out to these people I had never met.  Parenthood is hard enough…starting kindergarten and making friends and becoming part of a new community are all hard enough…without the added difficulty of having to send a message to all the parents at your child’s new school sharing with them her delicate medical condition.  And these two parents had done just that with such grace and such generosity that I was rather overwhelmed.

Cate and I went home that afternoon and I told her about the email I had received.  We watched the video put out by DebRA which explains EB in the Classroom in a clear and very child-friendly manner.  I explained to Cate that the top layer of our skin is attached to the under layer like grass on top of the earth.  But Rafi’s “grass” is missing the “roots” so she gets ouchies very easily.

Cate turned to me and said, “But how will she hold her babies?”

I shrugged helplessly and blinked back tears.

We are so lucky that Rafi is in Cate’s class.  We have gotten to know her and her family and Cate and Rafi are friends.  And I have become friends with two of the most wonderful parents you could ever hope to meet.  Brett and Jackie are generous and kind, they are engaged and active, and they are tireless and tenacious advocates for their daughter. And because they are so wonderful themselves, a community of people has formed around them–friends who they support day in and day out, and who in turn decided to reach out and try to help Rafi.  And so, last year, the First Annual Rafi’s Run was held to raise money to find a cure.

EB is an absolutely dreadful disease.  You can read all about it online, but suffice it to say that for Rafi’s condition there is currently no cure.  Every day Rafi comes to school wrapped from neck to feet in bandages.  Every night she undergoes a two hour bath time in which those bandages are painstakingly removed, her wounds are tended to, and her bandages are reapplied.  It is, I believe, excruciating.  Not only is Rafi’s skin involved–her inner organs are as well.  And her eyes.  And her esophagus.  And her teeth.  Her little feet are blistered and torn from the simple act of walking.  She has to wear her clothing inside out because seams cause blisters.  From what I can see, there is no end to the misery of this disorder.

And yet.  Rafi laughs.  She sings.  She makes jokes.  She reads she dances she writes poetry.  She comes to school rain or shine.  She eats black olives.  She loves magic shows and Elmo and “Monsters Inc.”  And when every other kindergartener went ice skating with their 4th grade buddies, she had the courage to talk to the entire middle school and answer questions about herself and her EB.  Rafi blows me away.

The Second Annual Rafi’s Run is taking place on March 10th here in Riverside Park.  10 am.  Enter at 103rd Street.  Rafi’s Run is a 5K Run/Walk to raise money to cure Rafi and all the kids with EB.  It is hard to hear Rafi’s story and not be moved to help.  And there are lots of ways to do so!

Come run with us!  Sign up at the Rafi’s Run website to fundraise and run. Or jog. Or walk.  Just be there.  Donate to a runner or team.  Might I suggest: Team Stetson!  We are so close to our fundraising goal and we’d sure love the help!  All donations go directly to the nonprofit DebRA to fund EB research and are fully tax-deductible.  And finally, spread EB Awareness.  EB is often referred to as the worst disease you’ve never heard of.  We can change that.  Like us on Facebook.  Follow us on Twitter.  And share the run with your friends and family.

How will Rafi hold her babies?

Let’s all fight to ensure the answer to that question is: Closely. Tirelessly. And as long as they need to be held.



3 Responses so far »

  1. 1

    Jackie said,

    March 1, 2013 @ 10:57 am

    That was beautiful. Thank you. I am holding back my own tears as I feel so lucky to have friends like you. xo

  2. 2

    Emily Rosen said,

    March 1, 2013 @ 2:11 pm

    Thank you so much for sharing this beautiful piece. I’m often told that people have tears in their eyes when they watch the video of Jackie and Rafi explaining EB and Rafi’s Run to the students at her school. I had tears in my eyes reading what you wrote about Jackie, Brett and Rafi. It was so touching. You are such a beautiful advocate for Rafi. Thank you for everything you do.
    Emily (Rafi’s Aunt)

  3. 3

    Wendy said,

    March 3, 2013 @ 10:40 pm

    It is my absolute pleasure and honor. xoxo

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