I have known the Rokicki Family a short time. Amy and Jeff have 2 sons--Ethan and Ryan and 1 daughter--Olivia. Olivia has Rett Syndrome. She was diagnosed at 4 years old. Today they can diagnose girls as young as 18 months. Olivia is currently 14 and in the 8th grade. She loves her family and friends and school.

If you already are aware of Rett Syndrome, you know she is locked inside her body. She cannot communicate. She is non-verbal and does not have the use of her hands. She uses an eye gaze machine to help her communicate. Olivia has a great BIG personality! She enjoys watching Dora and Diego, LOVES music and talking on the phone--what teenager doesn't?? She also enjoys being read to. And as any typical sister would, she thinks it's funny when her brothers get into trouble. Imagine you are totally aware of everything around you but unable to speak, walk or use your hands. How frustrating!

Rett syndrome is a unique postnatal neurological disorder that is first recognized in infancy and seen almost always in girls, but can be rarely seen in boys. It effects all ethnic groups and very rarely affects males.

Rett syndrome has been most often misdiagnosed as autism, cerebral palsy, or non-specfic developmental delay.

Rett syndrome is caused by mutations on the X chromosome on a gene called MECP2. There are more than 200 different mutations found on the MECP2 gene. Most of these mutations are found in eight different “hot spots.” Rett syndrome can present with a wide range of disability ranging from mild to severe. The course and severity of Rett syndrome is determined by the location, type and severity of her mutation and X-inactivation. Therefore, two girls of the same age with the same mutation can appear quite different.

Today, there is no cure. But Rett Syndrome is CURABLE! Research has proven once protein levels are back to normal levels, symptoms subside.

Researchers at Harvard, Baylor, UVA, Weill Cornell, Emory, Salk Institute, University of Edinburgh and dozens of other top-notch institutions are delving into Rett Syndrome. 

Why?

Not only will their work help thousands of girls and women worldwide, but their findings have a direct impact on research on Autism, schizophrenia, bipolar disorder, Alzheimer's and many other disorders.

Funds we raise to dedicate to research are sent to the Rett Syndrome Research Trust.

Think of Olivia and her family. Think of how, hopefully one day soon, researchers can figure out how to reverse this debilitating disease. What would it be like for them to all have a conversation? Tell jokes? Until then, we will run for a cure. We will run for Olivia and all the beautiful Silent Angels out there living with this condition. 

Thank you for your support!

Steph

**(Sources of factual information: http://www.girlpower2cure.org/our-cause/what-is-rett-syndrome/ and https://www.rettsyndrome.org/)