An American Girl (10) who was born with a severe brain disorder and malformations on her face and thus became the target of merciless ridicule on the internet, died. Sophia Weaver of North Carolina died from complications of Rett’s syndrome.
Her mom – who sued online abuse and even got Twitter to change its rules about online bullying-posted a poignant message on social media announcing the sad news. “Our dear Sophia left this earth last night”, it sounded. “Once we have given the heartbreaking pain a place, we will continue to help others. In memory of her.”
Mother Natalie was 34 weeks pregnant when she was told that something was wrong with the child growing in her belly. When she visited the doctor for an ultrasound, she noticed that the baby’s face, hands, and feet were deformed. “My world collapsed,” she testifies in a video on her website.
Her daughter also appeared to have type 1 diabetes and Rett’s syndrome, a rare genetic disorder that prevented her mind from developing well, had seizures and had trouble breathing. She could hardly talk or walk. In total, she underwent 30 operations to make her life more bearable.
The family, however, did not allow themselves to be taken out of the field and surrounded the girl with all the love she had. And just because Sophia could barely talk doesn’t mean she couldn’t show her feelings. “She can roll her eyes very dramatically,” her mother laughed earlier. “She once called me ‘annoying’, an ‘insult’ with which I was delighted. I have to admit, I can be quite annoying.”
Sophia loved creepy stories, riddles and did nothing more than play with her brothers and sisters, her mother explained. “We have a lot of fun together. She deserves respect and dignity,” said Natalie earlier this year. “She is strong, sweet and always positive.”
But not everyone felt that way. “From the beginning, some people behaved cruelly,” says Natalie. “When I took Sophia outside, people stared, whispered, and sometimes people went around us in a wide arc. It was so bad that we started to turn back on ourselves up to 3 years ago. Then I decided that we would not hide again.”
But then the worst imaginable happened. Internet scrolls used a picture of Sophia in a tweet that promoted abortion. “There’s nothing wrong with thinking that every child matters,” it reads. “But a lot of them don’t matter, hence the amniocentesis. It should be mandatory and if it is negative and the woman wants to have an abortion, then all costs incurred thereafter should be paid by the parents.”
The comments were, if possible, even worse. “You should have terminated the pregnancy,” it sounded on Twitter, among other things. “You just want attention. This kid is creepy. No one wants to see her in public.” And the responses keep coming: “she is flawed. What’s the point of her life?” and “your child is a horrible monster,” it sounded hard.
Mama Natalie decided not to let it go her way. She called Twitter to account for his flawed online bullying policy: “Twitter apparently does not think that someone who uses a picture of my child to promote and call for abortion to remove all “flawed” from their mother’s belly is breaking the rules. Why? Because harassment against people with disabilities is not included in their rules.”
The company did not remain deaf to criticism and took the photo and the two offline. It also adjusted its rules. Since then you can also signal to bully based on limitations.
Natalie continued to climb up the barricades and stand up for people with disabilities. “I want people to see how inaccessible the world is to people with chronic diseases and disabilities,” she said to American magazine Today, among others.
Sophia spent the last two months of her life in a nursing home, but not before she and her family had finished a whole bucket list of things they wanted to do together. She went to the cinema, attended a concert by the Charlotte Symphony Orchestra, received hair extensions in a real salon and visited an aquarium.
The girl also enjoyed the time she spent with a therapy dog and a pony. “Many of those things she did for the first time because her weakened immune system prevented her from getting out much,” says her mother. “And she loved it.”
The girl died a few days ago after she had a high fever.
Natalie also plans to continue her work for people with disabilities after the death of her daughter. She does that via her website, among other things. “I am an activist. I still want to make the world a better place and am constantly thinking about it,” she says.