Less than two weeks before Bee's 10th birthday & my quest continues to keep her health at an optimal level - tonight just a few minutes ago I received an email from the EB Care Registry stating the following:
"Thank you for all the additional information. I consulted one of the clinical experts for the EBCare Registry who agreed with moving her to the generalized, other category (RDEB-GO)."
So Bianca has been moved from the Recessive Dystrophic EB - severe generalized (RDEB-SG, formerly RDEB-HS) category to the Recessive Dystrophic EB - generalized, other (RDEB-GO, formerly RDEB-non HS). This doesn’t mean her challenges and way of life changes but it just solidifies what I’ve always known – that RDEB - no matter how clean cut you try to put it - cannot have just one category & two sub-categories. Today I’m sure that the advances that are much more tangible are slowly putting a bigger picture together!
DEFINITION OF BEE'S FOREVER EVOLVING "CATEGORY"
Always "keep the faith"!
Bee & Zach - Aug 2012
Bee totally concentrated on her masterpiece!
These beautiful pictures were taken at the 2012 Debra PCC by Christie Zink - such a warm soul and talented woman!