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I Love Someone With Rett Syndrome! Meet Victoria!
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I LOVE someone with Rett Syndrome! Meet Victoria!

This is my daughter. She came into my life one year ago, born from my heart. She has completely changed my world and the way I live. I have always been extremely caring and empathetic and I have always tried giving all of my love to people, especially in romantic relationships. But turns out that all that care I had, was too much for people to handle. I was often heartbroken and lonely. Then I met Ernst, the love of my life! He completed me in every way, but that only happened because Victoria was part of the deal (we also have Sebastian, my little angel). All of that care and empathy that got rejected so many times, I now devote to her and she gives it all back. She may not speak and may not be able to say "I love you", but I know that when she hugs me and grabs me by the neck and gently bites my cheek she is doing much better than just giving me words! I am a doctor and I honestly didn't know anything about Rett, obviously I had a lot to learn. And all of that contact with the research and also all the time spent with her, gave me another purpose in life. You see, I have always wanted to be a psychiatrist, but I didn't know which area to focus on. Thanks to my princess, now I know I will become a pediatric psychiatrist. She is the sweetest kid I know, always smiling to everyone at all times. Loves being surrounded by people, paying attention to every thing in her surrounding. The life of the party! She can be quite opinionated as well, don't we dare get her late for school! You'll get a screaming fit! And she aaaabsolutely loves popcorn, there is not stopping there.
People sometimes question me how I feel about getting in a situation that they consider "problematic", which for them just to have to handle with two kids of a divorce could be overwhelming, but in the midst of that a special needs child is "just too much".
But all I can think of is how I have never been this happy in my life and a big chunk of that happiness comes from this angel's face and all the love we share. I can truly say that God with all His might and mercy was beyond gracious to me when He gifted me with this amazing family! I am thankful to Him every day. She may not have come from my womb, but as sure as the sun shines she is my daughter. And I will love her to infinity and beyond.
I just want to say that what makes me feel even more blessed is to be part of this family and have the privilege of getting to see the immense love shared by Vicky and her fabulous Pappa Ernst. He is an incredibly strong man, that has faced so many problems in life and he still stands strongly every day. He is our rock and we can all lean on him for everything. She looks at him in such a special way that through her gaze you can see all her love and admiration for him. And the same goes for him. I simply love this man beyond words can express. And my family is everything for me. Thank you Lord for my gift!

********** Rett Syndrome Awareness **********

Definition of Rett Syndrome:
Rett syndrome is a rare (1 in 10.000) genetic neurological and developmental disorder that affects the way the brain develops, causing a progressive inability to use muscles for body movements, and especially speech. It occurs almost exclusively in girls. (It affects the X chromosome, and when it happens to boys [that are XY], it becomes incompatible with life. Unless that boy suffers from another genetic disorder where he actually has 3 chromosomes, as in XXY, the Klinefelter Syndrome, the incidence for that is 1 in 15.000.000).
Although there's no cure for Rett syndrome, potential treatments are being studied. Current treatment focuses on improving movement and communication and providing care and support for children and adults with Rett syndrome and their families.
People usually define Rett as a mix of Cerebral Palsy, Autism, Parkinson and Dementia. (Definitely not an easy ride!!!)

Signs of Rett syndrome that are similar to autism: incontinence, screaming fits, inconsolable crying, breath holding, hyperventilation & air swallowing, avoidance of eye contact, lack of social/emotional reciprocity, markedly impaired use of nonverbal behaviors to regulate social interaction, loss of speech, sensory problems.
Signs of Rett syndrome that are also present in cerebral palsy: possible short stature, sometimes with unusual body proportions because of difficulty walking or malnutrition caused by difficulty swallowing, hypotonia, delayed or absent ability to walk, gait/movement difficulties, ataxia, microcephaly in some - abnormally small head, poor head growth, gastrointestinal problems, some forms of spasticity, chorea - spasmodic movements of hand or facial muscles, dystonia, bruxism – grinding of teeth.
The age when symptoms appear varies, but most babies with Rett syndrome seem to grow normally for the first 6 months before any signs of the disorder are obvious. The most common changes usually show up when babies are between 12 and 18 months, and they can be sudden or progress slowly.

Most children with Rett syndrome lose the use of their hands. They tend to wring or rub their hands together.
Between ages 1 to 4, social and language skills start to decline. Children with Rett syndrome stop talking and can have extreme social anxiety. They may stay away from or not be interested in other people, toys, and their surroundings.
A child with Rett may have uncoordinated breathing and seizures, including very fast breathing (hyperventilation), forceful exhaling of air or saliva, and swallowing air.
Children with Rett syndrome also tend to become tense and irritable as they get older. They may cry or scream for long periods of time, or have long fits of laughter.

Please, feel free to share this story. By doing so, you will raise awareness of a disease that once cured will have the potential to cure many other diseases!
Credits: Jackie Sulamita Gimenes
541 views Mar 20

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