It is important to show support to families, caregivers, friends and professionals that have been and are being touched by someone with Rett Syndrome. Rett Syndrome can be devastating to all involved especially the child/adult. Therefore, we must create more awareness for the good of all involved. It is critical to get a timely diagnosis and begin relevant intervention strategies for this unique disorder. Furthermore, the need for a cure is present in so many lives today. In addition to support, funding research is at the forefront of our minds. Research has made unbelievable strides in the last 10 years. Our goal is to push it further. A cure for Rett Syndrome is near, so near that the scientists have hope.

Caitlin's Family have hope.

 

 

 

 

Rett Syndrome is a devastating disorder and is the most physically disabling of the autism spectrum disorders. It strikes at random in early childhood, affecting little girls almost exclusively. Many girls live into adulthood, requiring total, 24-hour-a-day care.   There is no treatment beyond supportive, and often ineffective measures such as feeding tubes, bracing, orthopedic and GI surgeries, and medications for anxiety and seizures. First recognized only 25 years ago, the prevalence of Rett Syndrome equals that of Cystic Fibrosis, Huntington*s and ALS but is vastly under funded in comparison to those disorders.  We must do something to help our girls.

The Eyes Have It!