The mission of the New Jersey Rett Syndrome Association is to contribute towards an improved quality of life for girls and women affected by Rett syndrome. One of the ways of achieving this mission is to provide a network of Rett syndrome specialists serving the New Jersey tri-state area. We believe that by raising awareness, we can foster public attitudes conducive to early intervention, treatment, support and research of Rett syndrome.
NJRSA is proud to support the ongoing research funded by:
Our daughter Heather was the perfect, beautiful baby. As many of our stories go, at around 9 months we noticed she did not want to play pat-a cake or wave bye-bye any more. Babbling stopped and was replaced with a long period of crying and biting her hands. Doctors thought she might be autistic, but she was too outgoing, smiling, happy and loving people. Enrolled in early intervention programs, then private special schools for autistic children, we knew she was not autistic. But the program was perfect, lots of one on one attention. By about 8 years old, her seizures became worse and after seeing many different doctors, we finally heard the words “Rett syndrome”.There was no internet then, but we went to the library, read all we could about it and contacted Kathy Hunter at the International Rett Syndrome Association. We knew we finally had a diagnosis and were now part of a new “family”. Heather was 10 years old then and we have been advocating, educating and spreading awareness of Rett syndrome ever since.
Heather had her heel cord lengthened at around 13, g tube placed at 16, and spinal fusion at 17. She is now 33 years old and still has uncontrolled seizures but is otherwise healthy. She lives at home with us, and attends an adult day program 3 days a week. We have some nursing help at home on most of the days she is not at her program. She enjoys eating out, going to the mall and traveling in the RV with us, although we don’t get to go nearly as often as we would like!
TELL US ABOUT YOUR DAUGHTER!
Leslie, Mike, Heather and Holly Greenfield
(click to enlarge photos)
We look forward to hearing about your family. Send your story and photos to
The Common Meadow Violet, the New Jersey state flower, symbolizes the beauty and fragility of our girls and women with Rett Syndrome and their ability to flourish.