My why is and always will be the beautiful woman who shaped every ounce of my world.   My sister Kristi lived for 51 years with Rett Sydrome and was 10 years older than me.  I never knew a world without Rett Syndrome.   Rett syndrome took Kristi from us 2 years ago and I continue to work with girls with Rett syndrome through my work with Rett University because I do not want to be without our amazing girls in my life.  What I do hope for and run for is a cure for Rett syndrome.  It is too late for Kristi but it is not too late for the girls and boys still living with Rett syndrome. 

Rett syndrome takes so much from our girls and boys.  Imagine not being able to talk, control your body, having seizures, breathing issues, scoliosis, multiple hospital stays, pneumonia, dystonia, constant movements with your hands, having no independence and being completely reliant on others for every aspect of your care yet being aware of everything that is going on around you.  Having people talk to you like you are not aware or able to think but understanding EVERYTHING.  This was Kristi's life for 51 years, this is our girls and boys lives who are living with Rett syndrome every day.  

What is so amazing to me is this.  Kristi was born in 1965.  Rett syndrome was unknown. Kristi regressed at age 15 months and started having seizures at 3 years and Rett syndrome was still unknown.  Fast forward to 1986 and Rett syndrome is being introduced.  Kristi lived for 21 YEARS without knowing why she had lost her hand use, her walking, her voice.  !986 Rett syndrome is introduced, 1999 the genetic mutation that causes Rett syndrome is found and in 2007 Rett syndrome was REVERSED in mice models.  Since that time, clinical trials and more research is being done and we are closer than ever to a cure.  The research being done may have a far reaching affect not just for Rett syndrome. 

Kristi shaped my world and taught me how to be the person I am, the special education teacher I am and the Rett U coach that I am becoming. Please help me reach my goal and raise needed funds for research, family support and education for Rett syndrome.  My world is not the same without my silent angel and I miss her every day. I know how blessed I was to have her for 51 years, though that is not the norm.  Please help me raise funds for much needed research so that other siblings and parents do not have to know a world without their silent angel.