At just 9 years old, Sophia Weaver is undoubtedly an incredibly strong little girl. But as this brave child from North Carolina proves wrong the haters who can't see past her disability, it's also clear that Sophia gets her strength from her mom, Natalie. This fierce parent not only took on the online trolls who think this innocent child should be dead, but also successfully influenced Twitter to change one of its policies — all while raising awareness for her daughter's condition.
Sophia was born with deformities and diagnosed with Rett syndrome at just 1 year old.
Weaver first found out that her daughter was going to be born with deformities of her hands, feet, and face during an ultrasound at 34 weeks. "They weren't sure that she'd survive birth, but she proved to be a fighter and did," she tells CafeMom. "Since then, she has had 22 surgeries to improve her quality of life and to reduce pain."
The family first found out that Sophia had Rett syndrome when she was just a year old, and this neurological disorder has greatly impacted her brain development. "It's caused her to lose the ability to walk, talk, and do things for herself — the skills that did develop began to disappear at age 2," Weaver says. "It causes seizures, breathing issues, tremors, and increases the risk for sudden death."
"There is no one else in the world who looks like Sophia," her mom says.
In addition to Rett syndrome, Sophia has an unique combination of other deformities and conditions, including diabetes. "She is truly one of a kind. This was a random and unknown spontaneous genetic change that can happen to anyone," Weaver says. "There's a 1 percent chance."
Weaver has become a vocal health-care activist for her "amazing" daughter.
Before Weaver began speaking out two years ago, she was a stay-at-home mom of three kids. She considered herself a private person due to the cruelty she'd experience whenever taking Sophia out in public. "It was a pain that I struggled with," she says.
However, she found out that North Carolina was trying to change coverage and "reduce services for medically fragile children," so Weaver decided to fight back to protect health care on the local and federal levels. "I felt I had no choice but to speak out because my daughter's health care and life was being threatened," she says.
As Weaver advocated through press conferences, interviews, and social media, not everyone focused on her message that health-care changes can have a serious impact on people with chronic illness or disabilities.
As soon as Weaver went public, the trolls and haters came flooding in.
Weaver says that she knew that negativity was to be expected and wasn't surprised when people started attacking Sophia online based on her appearance. "I felt strong against it and it didn't bother me, but other days it would crush me and I'd cry," she says. "I'd push it away so I could stay strong and continue my work, but those comments were slowly building up in my mind."
But one ad went even further than the disgusting comments -- it used a photo of Sophie to advertise abortions.
In November, a photo of Sophia was used in a horrific tweet advocating for "coerced abortions." It called for parents to abort fetuses with abnormalities discovered during pregnancy, saying that those who don't should be responsible for all "accrued bills after that."
Understandably, this tweet set Mom on a mission. "The eugenics ad was different because this person was using my child's image to promote eugenics. He was stating she was defective and undeserving of life," she says.
According to Weaver, the man made a point to reach out to her on numerous occasions and started contacting her friends after she blocked him on Twitter. "It was more aggressive than I had ever experienced. It took me months to face it and when I did, I went full force against it," she says. "It was the [buildup] of all the hate I had received and the fact that Twitter was allowing it."
She spoke out against him – and Twitter for allowing it.
According to Weaver, Twitter sent her a message saying the tweet didn't violate its policies, and the user remained active with the tweet still up. "She will live a miserable life and be a burden on the family and society. Civilization does not run on feels," one tweet said, according to CNN.
Weaver and her followers continued to press Twitter and she was given a different answer after a week. "[They said] they made a mistake. Twitter had it in their policy to protect people with disabilities against hate," she told CNN.
Twitter banned the user and finally made an important change.
"I pushed for change for not only myself and my child but for others," she tells CafeMom. "My friend and fellow activist Julie Ross brought it to my attention that Twitter didn't even have a place to report hate speech/harassment against people with disabilities, so I set out to change that and did! Twitter added disabilities to their violation reporting tool a few days ago."
This is just one of many battles that the pair will have to fight -- but at least they won.
"I didn't give up because I never give up when it comes to fighting for my child," she says. "I've been advocating for Sophia's quality of life since she was born and I never take no for an answer when it comes to doing right by my child. She deserves respect and love and I don't care who it is I'm fighting against — Twitter, our government, etc. I will make sure she is protected."
Weaver also didn't stop because she knew that so many others in the disability community have experienced the same pain from online trolls. "They are constantly harassed, discriminated against, and receiving cruel remarks because of their disabilities and I won't stand for it anymore," she says. "I was happy when they finally suspended the account but it wasn't enough. I didn't stop until Twitter took further measures to include disability in their violation reporting tool to protect the disability community from hate on their platform."
And she finally got the justice that she and Sophia deserve.
"It doesn't feel like sweet revenge — this should've never been allowed to happen in the first place. Our society needs to be accepting of disabled people and unfortunately we have a long way to go," she says. "It did feel like a tiny amount of justice had been served. There will still be people who are cruel to disabled people on social media, but I'm hoping this change can lessen it a bit. This change will mean nothing unless it is enforced, and I plan to do the work to ensure Twitter enforces it."
But either way, Sophia remains a happy and positive child who couldn't give a damn what haters think.
Although Sophia relies on her family for constant care, that doesn't mean she isn't enjoying a rich life filled with joy. "She loves to laugh, listen to music, be surrounded by her family, and play with her little brother and sister. She lives a full and beautiful life and makes the people who know her, better human beings," Weaver says. "She can't talk but she can communicate and is full of sass. Just like most 9-year-olds, she rolls her eyes at me when I annoy her and she is silly!"
