To help raise funds and awareness with GIRL POWER 2 CURE to CURE Rett Syndrome.

My/our life changed in so many ways on Jan 3, 2006. Our little princess Ysa was born. Little did we know what life had in store with this real life angel. Over the last few years Ysabel has shown us what being strong is really all about. On April 3, 2008 the dreaded phone call came with the answer to what was wrong with our little girl. That phone call put all my worst fears into words. Your daughter has RETT SYNDROME! She cried for hours and hours during her regression period. The last 2 years Rett has dug it's nasty claws deeper into her. She continues to have seizures daily, she stops breathing daily to the point of turning blue, she has constant GI issues, tremors and the list goes on. She no longer has words to tell us what is hurting her, if she is hungry, tired, has to go the bathroom. She is now on a feeding tube to get her daily nutrition. She can not walk. She depends on us and others for pretty much everything. She has severe apraxia...Imagine having an itch but your brain will not move your hand to scratch it. Through it all she continues to smile bigger than anyone I've ever met. She handles everything thrown at her with such strength and determination. Ysabel is a true inspiration to me..this is why I am getting WAY out of my comfort zone and will try to run 13.1 miles for her and a cure. Those of you that know me well know I haven't exercised in ages--so this will be a challenge..The thought of it makes me sick to my stomach :) But for her I will get through this fear.

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Organization Information

  • Name

  • Phone

    904-875-4810
  • Address

    2891 BREAKERS CT
    AMELIA ISLAND, FL 32034
  • EIN

    208011668

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