That’s my niece, Kaya. She was diagnosed with Rett Syndrome this year.
She is a sweet, loving, and affectionate girl. When my sister, Linda, noticed that Kaya was having trouble communicating it began the long journey to the eventual diagnosis that she has Rett.
For those of you who don’t know know what it is, Rett Syndrome is a neurological disorder almost entirely exclusive to girls. Her development has been stunted and eventually what little development she has gained, she will lose. The loss of motor skills is called Apraxia.
She can begin to have issues with breathing, obsessive hand movements, trouble sleeping, and already she struggles to communicate what she needs.
Despite how many difficulties she faces in a day, she is an amazing little girl. Kaya is patient with her little sister, waits for Linda to understand what she is trying to ask for, and loving to everyone.
Understanding the comprehensive abilities of girls with Rett is unable to be exact because they cannot communicate what they understand. But most seem to grasp a lot more of what they experience than they can express.
Because it is a sporadic mutation of a gene Rett does not discriminate with respect to race or ethnicity. It affects about 10,000-15,000 thousand girls.
I am confident that a cure for Rett can be found in my niece’s lifetime.
If you find yourself inclined you can email RethinkTrauma@gmail.com to order a shirt, a bracelet, or donate directly to a Rett fundraiser. We would be more than happy to help you learn more ways you can become involved.