Worst day yet....

I am sure people cringe when they here me talk about Rett Syndrome awareness or about my latest fundraiser to finance the research for our cure but days like today are why I do what I do - because Rett Syndrome has taken over my daughters body and in turn taken a part of my heart.

Today has been the WORST Rett Syndrome day ever. Brooklyn and I just returned home from the ER. They had to call an ambulance to school - she was blue and unresponsive. We have been dealing with these "rett episodes" for awhile now but they are getting more frequent and stronger...praying they are not seizures. (although they suck no matter what they are!) We see her neuro on Wednesday. This has been a BAD "Rett Day" Yes Rett Syndrome - I will say it again - we are very AWARE of you here in our house but I will continue to raise awareness and educate the world so that people might help me in my fight to get rid of you for good. Leave my little girl ALONE!