I am constantly amazed and inspired by other members of the Rett world and their strength. If there are any positives in joining this community, it has been to "meet" these Moms (and Dads)! No one understands my family's pain like they do. There are many days that this pain is overwhelming, so much so that I can not even put into words how I am feeling. Then I'll read another Mom's blog (or exchange emails) about her daughter's journey with Rett Syndrome and she has put it into words for me, almost as if I wrote the words myself. I'm sad that Rett Syndrome is what we have in common and that we were not able to meet under different circumstances. But it is comforting that I am not alone and that they share my hatred for this awful disease that has robbed my daughter of the typical childhood that I dreamed she would have. I am thankful for the many, many Rett Moms that have paved the way and struggled with finding a diagnosis for their daughter before their was a test for RS. You have offered invaluable information on how to keep our girls happy and healthy. You have also shown me that it is possible to get past the Regression stage of RS and that there is hope on the other side. So, cheers to all the amazing Rett families and the unconditional love for our girls (and boys).
Hi and welcome to our family blog! We have a 4 year old daughter, Reagan, who has Rett Syndrome and a 2 year old daughter, Lauren. This blog is to help others understand Rett Syndrome and to share our journey.