Rett Syndrom Awareness
My daughter, Charli, an 8 year old precious angel was diagnosed with Rett Syndrome. Rett syndrome is a neurodevelopmenal disorder that affects girls almost exclusively. It is characterized by normal early growth and development followed by a loss of purposeful use of the hands, distinctive hand movements, problems with walking, seizures, and intellectual disability. Charli was 15 months old and I came home one day and she could no longer speak, I never heard another word. That morning she sang me her favorite song and that night could not say good night. It was that quick.
The course of Rett syndrome, including the age of onset and the severity of symptoms, varies from child to child. Before the symptoms begin, however, the child generally appears to grow and develop normally, Charli was completely normal. She walked on time, talked, was a very happy fun kid. Then, gradually, mental and physical symptoms appear. She started by not talking, we took her to a speech therapist and within a month she started having problems using her hands, and eventually walking. When she was walking it was forward then backward and then back forward. The onset of this period of regression is sometimes sudden.
Charli exhibited autistic-like behaviors in the early stages. Her other symptoms have included walking on her toes, sleep problems, teeth grinding and difficulty chewing, seizures, cognitive disabilities, and breathing difficulties while awake such as apnea (breath holding), she has gastrointestinal problems, you name it and she has a difficulty with it.
But most important to learn about Charli is not how sad her disorder is but how amazing of a child she is. She has taught me so much and my kids are so blessed to have her as a sister. Charli lives in the moment she does not worry about tomorrow and she isn't weighed down by the past. I do not feel sorry for Charli I wish to be like her. Her smile lights up the world.. She taught me what it looks like to have a relationship with Christ. She shows me what it looks like to not have sin in your life...it looks peaceful. When you meet Charli your first response will be to take a deep breath and a sense of peace and happiness will come over you. That to me is Rett Syndrome. An amazing opportunity to learn for all of us... a time to look at a child who has nothing to be happy about and yet because they can feel God they can feel Christ's love they choose to be happy. When I was asked to write her story I thought well you need to know the reality of Rett Syndrome and how sad and aweful it is but Charli is not sad and aweful she is inspiring and my hero. I am trying to help raise money for the Rett Foundation because they are close to a cure and I would love to hear Charli's voice again. I want to hear her sing. Please help out these angels and come meet Charli.
The course of Rett syndrome, including the age of onset and the severity of symptoms, varies from child to child. Before the symptoms begin, however, the child generally appears to grow and develop normally, Charli was completely normal. She walked on time, talked, was a very happy fun kid. Then, gradually, mental and physical symptoms appear. She started by not talking, we took her to a speech therapist and within a month she started having problems using her hands, and eventually walking. When she was walking it was forward then backward and then back forward. The onset of this period of regression is sometimes sudden.
Charli exhibited autistic-like behaviors in the early stages. Her other symptoms have included walking on her toes, sleep problems, teeth grinding and difficulty chewing, seizures, cognitive disabilities, and breathing difficulties while awake such as apnea (breath holding), she has gastrointestinal problems, you name it and she has a difficulty with it.
But most important to learn about Charli is not how sad her disorder is but how amazing of a child she is. She has taught me so much and my kids are so blessed to have her as a sister. Charli lives in the moment she does not worry about tomorrow and she isn't weighed down by the past. I do not feel sorry for Charli I wish to be like her. Her smile lights up the world.. She taught me what it looks like to have a relationship with Christ. She shows me what it looks like to not have sin in your life...it looks peaceful. When you meet Charli your first response will be to take a deep breath and a sense of peace and happiness will come over you. That to me is Rett Syndrome. An amazing opportunity to learn for all of us... a time to look at a child who has nothing to be happy about and yet because they can feel God they can feel Christ's love they choose to be happy. When I was asked to write her story I thought well you need to know the reality of Rett Syndrome and how sad and aweful it is but Charli is not sad and aweful she is inspiring and my hero. I am trying to help raise money for the Rett Foundation because they are close to a cure and I would love to hear Charli's voice again. I want to hear her sing. Please help out these angels and come meet Charli.
If you would like more information on Rett Syndrome or would like to make a donation please visit http://www.rettsyndrome.org/