The Scarlett Parks Family Journey With Rett Syndrome
Rett syndrome is a debilitating neurological disorder diagnosed almost exclusively in girls and occurring in one of every 10,000 female births in the United States and around the world. Every two hours a girl is born somewhere in the world with Rett syndrome a non-discriminatory disorder striking all races and ethnicity worldwide. Typically, girls are born healthy and early development phases seem normal. Then generally somewhere around 18 months, some sooner and some later, regression in development appears, particularly affecting speech, hand skill and coordination. There are unintentional, repetitive hand movements becoming constant while awake. A complete loss of speech and purposeful hand use and slowing of the normal rate of head growth. Seizures, disorganized breathing patterns while awake, irritability are often experienced. There are digestive complications, problems with chewing and swallowing and cardiac function issues are all a part of being a “Silent Angel” with Rett syndrome. Rett syndrome can best be described as the perfect storm of Autism, Multiple Sclerosis, Cerebral Palsy, Epilepsy and Parkinson’s Disease all wrapped up into our precious angel. Girls with Rett Syndrome are smart, they understand everything you say, but they are literally trapped inside a body that does not work.
Here is Scarlett’s story, via mommy, of her journey.
My name is Scarlett and I am now 5 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” 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.”