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
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| Bee @ Downtown Disney ♡ |
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| Bee @ Dave & Buster |
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| My "Incredible" Family @ Hollywood Studios |
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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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