Remarkable Rylans Tobi Fund

Rylan is best known for her infectious smile. Her nickname is "Smilin Rylan". She has a loving older sister named Ava and a sweet baby brother named Maddox. She loves animals and loves to go shopping with her mommy. Rylan was late in development on every milestone she hit but we were always told not to worry that she was just stubborn and wanted to take her time. My husband and I knew something wasn't right and continued to search for answers for our little girl.

For about 1 year we fought to find an answer for her but we changed her pediatrician when she was 2 and told him all our concerns about Rylan. He referred us to Dr. Percy at UAB who is a specialist on Retts. Our world was forever changed on December 19 2013 when we got the diagnosis confirmed that it was Retts.

Rylans mutation is R294X which is known to be on the milder side of Retts but none the less we still have struggles with the Rett monster. Luckily Rylan can walk and feed herself by hand. I know God blessed us with her and having her has made me a stronger person. We live everyday as its our last. We know tomorrow is never promised and continue to pray that a cure is found for our girl and her Rett sisters. We have started our own little project to help raise money to fund further research. We are now doing speech therapy during the week at the UCP building in Bham and Rylan has been working on a communication device called a Tobi. This decvice could change her life by giving my baby a voice, one that she can be heard with!  Thanks for taking time to read her story and we send love to you all!