Sunshine for Sadie

Hello friends and family. October is Rett Syndrome awareness month. This is very close to my heart. About a year ago our sweet spunky little Sadie was diagnosed with Rett Syndrome. It is a very mean disease. Rett Syndrome is a rare regressive neurological disorder that usually affects only girls. Girls with Rett Syndrome appear to develop normally until six to eighteen months of age when they start to lose acquired skills. This begins with the loss of communication skills and purposeful use of their hands and is followed by progression to unusual movements such as hand washing, disturbances in gait and slowing of head growth. Seizures and breathing problems may also appear. Rett syndrome affects one in every 10,000-15,000 live-born female babies. It is caused by a gene mutation that occurs spontaneously. Sadie lost her ability to speak around 15 months. What she can’t say with words she makes up for in her bright smiles and sweet hugs. We are fortunate that at this time it is believed that Sadie has Atypical Rett Syndrome and at this point she still walks, runs, jumps and has pretty good use of her hands. At the end of October we will be going to the Bluebird Rett Clinic in Houston and Sadie will get to see one of the most knowledgeable doctors on Rett Syndrome. There are many drugs on the horizon to help Rett Syndrome and it has also been cured in mice. We are raising money to help with travel expenses to Houston and want to donate a portion to Rett Syndrome Research in Sadie’s name.