Just imagine you are locked in your brain.  Imagine the world happening around you, but it being nearly impossible to communicate all those emotions, thoughts and feelings you have inside of you.  The world is spinning around you, and you are not able to dance along with it.  This is Rett Syndrome. This is what Brielle experiences every single moment of every single day.  Rett Syndrome is a rare non-inherited genetic neurological disorder occuring almost exclusively in girls and leads to severe impairments, affecting nearly every aspect of the child's life: their ability to speak, walk, eat, and even breathe easily.  Brielle had normal development with no indication of delays until about 9-12 months old. She learned to crawl, cruise along furniture, and walk with assistance.  Brielle’s first word was “dog” and after her little brother was born she called him “Ca” for Caleb.  But those skills slowly regressed and she was diagnosed with Rett syndrome at 18 months old.

Despite all this Brielle continues to fight to communicate with the world around her.  She IS smart.  She has a computer called a Tobii that has a laser to “read” her eyes allowing her to select menus and buttons to tell us what her needs are.  She also uses her Tobii to read, express her emotions, and joke with her three little brothers.

We, the Pankow family, are fighting Rett Syndrome.  We are joining hundreds of other Rett Families to raise awareness and funds for Rett Syndrome Research by running the Disney Princess Half-Marathon on 22-25 February 2018.  Our goal is to raise $5,000 by January 12, 2018 for Rett Syndrome research.  Ben is running the half-marathon, Caleb and Josiah are running the 1 mile kid run.

Please join our family, and hundreds of others, by donating to Rett Syndrome research and raising awareness to fight Rett Syndrome!  So one day a cure can be found allowing Brielle, and all others effected by Rett Syndrome, to dance with the world around them.