Saturday, February 28, 2015

Rare Disease Day - What Does A Rare Disease Look Like?

Behind my daughter's gorgeous smile we have a monster lurking. Periodically it rears it's ugly head & tries to defeat us. However, it cannot break us down or apart! What does a rare disease look like? Like a happy go lucky tween who loves to sing, draw & act! Who has a desire for life...a creative mind that makes up these imaginary world of wonder & fun! It looks like any other kid her age that might have some limits in life but nothing that she doesn't overcome without a few modifications.

Today is rare disease day & just for today try & educate one person on EB...which is, in my opinion, one of the rarest diseases around.

Check out EB Research Partnership: www.ebresearchpartnership.org

Bee @ Downtown Disney ♡

Bee @ Dave & Buster

My "Incredible" Family @ Hollywood Studios

The REALLY MONSTER that EB can be...
But our Faith in God, our Spirit of Hope &
our Belief in Miracles plus constant woundcare
always help us defeat this monster in battle!



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