Lucrezia Coats:  

Dear Family and Friends, I don¿t even know where to begin or start to tell you about our long journey on this path we call Rett Syndrome. Eight years before that we begin this journey, Amanda was a high functioning, playful, social, active, vocal, very happy and ambulatory little girl until she began to have debilitating respiratory breathing problems in June of 1999. By that end of the year of 1999, Amanda was non-vocal and began to loose her ability to stand. Amanda was admitted into the hospital several more times since then due to her breathing problems and Respiratory distress. Amanda came home from the hospital in July of 1999 with the prognosis that she would not survive past Christmas. During this most difficult time, I had no diagnosis or answers from the physicians as to why this was happening to my precious little Amanda. Christmas came and went and with God¿s blessing, Amanda is still surviving and trying so hard to regain some of her abilities. Amanda continues to be fed through a gastronomy tube, and requires total care for her every day need. Amanda is still unable to communicate besides the loving look she gives us wi...Expand for more