Race4Rettmx

In May of 2003 we prepared for the birth of our first child.  Just like all new parents we were anxious and excited--all the hopes and dreams of our future family in this precious little girl.  The first year fulfilled all our dreams.  Emma developed normally and filled each day with joy.  She crawled, played with her toys and babbled at us.  Then just after her 1st birthday we began to suspect something was wrong.  But never did we dream of the nightmare of Rett Syndrome.  Emma's bright smile began to fade and she stopped turning to her name.  She began to regress, no longer crawling, standing or feeding herself.  Her babble ceased and we never heard the words Mommy or Daddy.  After numerous doctors visits we were given the diagnosis we most feared--Rett Syndrome.  This disease devastates its victims, stealing their most vital functions: communication and motor skills, and brings numerous medical problems as well (seizures, scoliosis, feeding tubes, heart arrhythmias...the list was too long).  We had to watch our daughter lose skills she once had and no longer be able to do the things she once could.  She became completely dependent on us for everything-eating, dressing, sitting, standing and moving.  We saw a beautiful little girl trapped in a body that no longer listened to her--that no longer worked like it should.  We saw our own dreams shattered--never would we hear Mommy or Daddy, never would we see her run with her friends, never would we see her whisper secrets to her sister, never would we see her walk down the aisle on her wedding day.  But through our sorrow and despair, Emma taught us unconditional love.  Her smile returned, her desire to live each day to its fullest evident in her eyes, sounds and actions.  She made us realize all that we have to be grateful for.  And despite this devastating disease, Emma at age 13 shows more courage and determination than anyone we know.  She wakes up smiling every day and although she cannot talk, she speaks to us every day with her eyes.  She works hard to control her body, for every step, and to communicate to us with her eyes and her looks.  She will always have our unconditional love but we want to give her more than that.  We want to give her the life that she and every child deserves.  Research in this disease is accelerating and more exciting than ever but we need help.  Most people haven't ever heard of Rett Syndrome so there is not nearly as much funding for research as is needed.  Please help us put an end to Rett Syndrome with your support for research.