Thank you for visiting Lily's fundraising page!  Our family is excited to participate in our second Chicago Strollathon, in honor of Jen & Jons three year old daughter Lily who has Rett Syndrome.  Please consider strolling with our family on May 20, 2012.  It will be a fun family event with activities, food, and raffles.  Our team the "Lily Bugs" will be wearing red and black.  This year we will be ordering team shirts.  Please let Jen Brown know if you'd like a shirt.

   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,  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 a special angel and brings so much joy to the lives that she touches.  Lily requires around the clock care and many therapies, but they 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!

 

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