Thank you for visiting Lily's fundraising page!  We are excited to participate in our first fundraiser, the Chicago Strollathon, in honor of our two year old daughter Lily who was recently diagnosed with Rett Syndrome.  Please consider strolling with us on May 14, 2011.  Our team "The Lily Bugs" will be wearing red and black. 

 

.  Rett Syndrome is a rare debilitating genetic disorder that occurs almost exclusively in girls. It’s caused by a random gene mutation every baby girl has an equal chance of acquiring. After 6 to 18 months of apparently normal development, girls with Rett Syndrome develop severe problems with language and communication, learning, coordination, and other brain functions. Because of Rett Syndrome, our daughter Lily cannot talk, walk, or use her hands in a purposeful way.  Though she is profoundly disabled, Lily is a bright, cheerful, loving little girl who makes great eye contact and loves her family so much.  Her beautiful smile lights up a room and her sparkling blue eyes show that she can understand much of what we say.  She is our special angel and brings so much joy to our lives.  Lily requires around the clock care and many therapies, but we hope some day she can break free from Rett Syndrome and live the life we dreamed for her.  Currently, researchers are working hard to find a cure for Rett Syndrome.

 

 

     Donating through this website is simple, fast, and secure. It is also the most efficient way to support our fundraising efforts for the International Rett Syndrome Foundation.  This organization has been so helpful to our family.  They are the leaders in Rett Syndrome Research. 

    Thank you so much for your support!  Our sweet "Lilybug" thanks you from the bottom of her heart!