Natalie weaver knows what another girl as her daughter Sophia in the world. And it is really unique. Nine-year-old girl had to undergo several operations, Onan, to speak, to communicate with the family using eye, sounds and special gadget.
Family the weaver’s daily encounters with people who do not believe in Sophia and even I wish the girl a speedy death.
Sofia was born with a deformed face and limbs. In the year she was diagnosed syndromethe. This neurological disorder disrupts the brain development at an early age, depriving the child of the ability to speak and move. Of course, Sophia needs round the clock care.
My daughter has endured 22 surgeries.She can’t eat, so we feed her through a tube. She suffers convulsions and shortness of breath.
Despite all the difficulties and fears, Natalie talks about his daughter not only as a miracle. But for thousands of brutal and faceless Internet users it is, unfortunately, no more than an easy target. So, one of the cruel comments on Twitter had forced Natalie to start a months-long struggle for the rights of his daughter.
I offered to kill her child
People found me, and insulted, wanted Sophia’s death. In November 2017, I came across a nasty post about the forced abortion and additional taxes with the photograph of my daughter.
Internet battle
The author of the humiliating soobseniem tried papistically on the eye: it otmetila in the post, otpravilsja a personal message and called for comments.
Weaver complained about the tweet and advised his followers to do the same.
I blocked him, and hoped that the post will disappear, but that did not happen. From техподдржкиTwitter said twine violated policy social network, so may not be removed.
Tech support and asked the supporters of the weaver family, but they came across the same dry answer.
The Troll mentioned my name and spoke to my followers, the comments under the post message left and its supporters. Absolutely strangers to me rasskazyvalimiserable existenceof Sophia and our family. Absurd!
Finally in January, the joint efforts of concerned people of the account with the offensive post was blocked, and tech support Twitter brought Natalie to apologize.
Propaganda changes
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Now Natalie is the founder of the Advocates for Medically Fragile Kids, which seeks to preserve the rights of children like Sofia. She is on the Board of United States of Care, a nonprofit organization that fights for effective and affordable solutions in health care. In his public speeches, weaver tries to sort out wrong predstavleniyah people with disabilities, and to tell the audience about how to react and communicate with such people.
Any person with a public mission know that trolling is inevitable. But weaver noticed that the attack on her daughter increasingly prioritariamente, since health care remains one of the major national topics.
Someone says that Sofia doesn’t deserve health care that she is a burden to society, so they must die. With the advent of social networks people are no longer afraid to vent his anger. Even children with disabilities have become a target.
I’m happy
Weaver doesn’t deny that life with a child with such violations difficult both physically and emotionally. But it is not the most important part of the history of Sofia.
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Unfortunately, for many of Sofia’s half. I know that facing people with disabilities. But I don’t want my daughter taken for an alien.
Of course, we are faced with many problems, but my daughter makes my life better. Thanks to her and to her other children, I know what true happiness is.
Syndromethe curable.An encouraging study
Rett syndrome was first described in 1966 by Austrian pediatrician Andreas rett. This is one of the most common diseases in a number of hereditary forms of mental retardation. The disease occurs when mutations in X-linked gene МЕСР2. This gene is responsible for the production of a protein, which in a certain moment of the development of the brain turns off from the work of several other genes, forcing them to stop the production of proteins, and the child develops normally. If МЕСР2 mutated gene, the child may appear child schizophrenia, autism, learning disability, and rett syndrome.
It is noteworthy that the pathology is found only in girls: they are regressing mental retardation, autistic behavior, loss focused and the emergence of special stereotyped movements in the form of squeezing of the hands, as in Parkinson’s disease. As a rule, in the first six-eighteen months ill child was developing normally, but gradually he begins to show lag in the development of basic motor skills, and slow the rate of growth of the head. Then comes the period of regression of mental development, the child stops talking, he having breathing abnormalities and seizures. The patient also loses contact with others, and this symptom is often mistakenly regarded as autism.
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With neurotic disorders, you can control, because all the neurons remain alive. However, the development of treatments for people with rett syndrome will need a lot of time.
In 2007, a team of specialists from the University of Edinburgh under the direction of Adrian Byrd conducted an experiment on mice. Scientists were able to activate gene МЕСР2 and made it completely funcitonally in just four weeks. As a result, the symptoms of rett syndrome in mice disappeared: disappeared tremor, regained normal breathing, normal movement and gait. In addition, Byrd and his colleagues were able to reactivate gene МЕСР2 in mice before the disease manifested itself, and to prevent the development of symptoms.
A key discovery of bird calls that his team was able to refute the conventional wisdom about the incurable rett syndrome, reports Reuters.
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