My name is Scarlett and I am now 12 years old. After more than a year of doctor visits, testing and waiting I found out that I was born with a disorder called Rett syndrome. You can’t catch Rett syndrome, you can only get it if you were born with it. Rett syndrome mainly affects girls and it is a bit different for each person. I have a very hard time with the muscles EVERYWHERE, so this is a big problem. My muscles are weaker than yours, do not always do what I want them to and can’t do many of the things yours can. Since over 80% of girls with Rett Syndrome walk, usually later in life, I have to practice a lot and keep making my muscles stronger. I can sit up on my own, but sometimes I get tired and tip over.
There is currently no cure for Rett syndrome but there is always hope.
Rett syndrome has changed our lives in so many ways. We often wonder what Scarlett would be like without Rett, but we are who we are and Scarlett is who she is because of Rett. The Scarlett Parks Foundation has been formed to raise funds and support a few of the organizations that have impacted us with the care and support for Scarlett. Rettsyndrome.org
is the world’s largest, private source of fund and Rett syndrome research. Katie’s Clinic
is our local, California, clinic that specializes in Rett syndrome and Valley Children’s Hospital
has support from Katie’s clinic in the diagnosis and treatment of Scarlett. Donations to the Scarlett Parks Foundation will go to the care of Scarlett and these three, wonderful, organizations to help fund clinical trials and research programs to find a cure.
Your help and support of the “Purple Pumpkin Party and the Purple Pumpkin Ride for Rett” will help bring research to reality. As a community, we all come together to fight for the greater good and this is why we believe God choose us and our community to meet Scarlett.
Girls with Rett syndrome may not have a voice but WE have the voice to raise awareness to find a cure for them.
“Scarlett is our world and we are her voice.”