Rett Syndrome Awareness
Did you know there is more to October than just pumpkin spice flavors and Halloween? It is also Rett Syndrome Awareness month. I recently sat down with a fellow mom in my community, named Nicole, to talk about Rett Syndrome Awareness. Her five-year-old daughter, Brynlee, was diagnosed with Rett three years ago.
The conversation we had was enlightening and I learned a lot about this neurological disorder. It was an important and informative interview, and I was glad to be able to write it for the local newspaper.
What is Rett Syndrome?
Nicole explained to me that Rett Syndrome is sometimes described as a combination of autism, cerebral palsy, and Parkinson’s disease. Due to a gene mutation on the X chromosome, Rett happens to mostly baby girls. It is near-fatal in many cases for baby boys. According to research this rare disorder affects an estimated one girl out of 10,000 worldwide.
It is not degenerative, which means a lot of hope lies in early intervention, therapies, and never giving up. Brynlee has an infectious giggle and bright eyes. She is seeing the world and inspiring others in it. This little girl is so much more than her Rett diagnosis. Brynlee is a student, a daughter, a sibling, and a granddaughter. She loves Mickey Mouse and is typically the cutest fan on the sidelines for her older sisters and their many extra-curricular activities.
Therapy and Support
A dedicated device helps Brynlee communicate with family, teachers, and friends. Through ABA therapy, a gold standard treatment, it was determined that Brynlee could make choices based on presented words and pictures. An eye gaze tracker can follow her sight-line and say aloud what it is she wants or needs based on images presented to her.
Rett Syndrome is an extremely frustrating disorder on many levels. One of them being that no case appears to be exactly alike. Facebook groups and online communities exist for support when it comes to asking about medications, side effects, and looking ahead to the future. It is a future that Nicole hopes will include walking and reading and more for her youngest daughter.
While seizures and a “loss of purposeful movement” are common with Rett, so too is a commitment to finding a cure. There are currently 19 Rett Syndrome clinics in the United States. Please visit the official Rett Syndrome webpage to learn more.
Wear Purple
As October closes out, consider wearing purple. It is the awareness color for Rett Syndrome.
Click here to read a portion of my article in the Dakota Dunes/North Sioux City Times. Please visit this site to order an issue or subscription.