I am 10 years old. I am very excited you have decided to visit. I was diagnosed with Rett Syndrome in May of 2005, when I was a little over 2 years old.
I cannot talk, or use my hands very well, but I can hear you and I understand you. I am a very social girl, and love to "go places" and spend time with friends and family. This can be a huge challenge for me, as I love meeting new people, and spending time with them, I can not chat with them or answer their questions in conversation without help from my mom, dad and brothers. My signature greeting to people whom I meet and enjoy being around is a connection with my eyes, a lean-in hug and an open mouth kiss on the cheek. (if my aim is good that day) With Rett Syndrome, many of the things I do are hit and miss depending on the day.
I hear many people tell my family how very sweet it is to greet them that way. It is my way of telling them I am happy to meet them.
I love going to school, (I am a student in Mrs. Reiger's 5th grade class) hanging out with my friends. I am a very social girl, full of smiles and giggles. I love doing everything that any other 10 year old likes to do, I just need a lot of extra help. I really enjoy it when my friends help me participate in school recess and activities, even though I can not tell them, It makes me really happy. I have a 1:1 aide at school, her name is Sam, she keeps me on my toes and challenges me everyday. I just adore her.
I have 2 brothers which can be quite a challenge for both me and my parents. I love them very much, but do enjoy it when they get in trouble, I laugh hysterically. Ryker and Spencer help me all the time, most of the time willingly, other times, because they have to. I know they love me, and I love them very much.
Rett Syndrome has taken away most of my independent skills and continuously challenges me to maintain the skills I have. I am intelligent, outgoing, and strong but, the one thing that frusterates me the MOST is my inability to respond the way I want to. I have so much to say, and do, but I am not able.
Even though Rett Syndrome has stolen many of my abilities that most people take for granted, my family chooses to stay positive and is dedicated to raising awareness about Rett Syndrome. My parents tell me that I am an inspiration to them and everyone I meet. I am trying to teach people about Rett Syndrome 1 day at a time.
I want to let you know that there is hope for All of us with Rett Syndrome. Research is moving very fast. In fact Scientist have found a way to reverse the disease in mice, leaving us with a lot of hope for a cure. What I really need is your help. Help us tell everyone we can about Rett Syndrome and if you can, donate to the cause. The great thing is that 100% of the donations from my Girl power 2 Cure page go directly to research! Isn't that awesome.