Mother of Young Girl with Rett Syndrome Takes a Stand on Twitter Bullying

CNN published this incredibly story about love and bravery earlier this month – and it’s worth a second look.

Sophia Weaver was born with deformities to her hands, feet, and face – leading to her Rett syndrome diagnosis a year later.

Rett syndrome is a rare, severe neurological disorder that affects mostly girls. The age of symptom onset for Rett syndrome varies, but the most common changes usually show when babies are between 12 and 18 months, though they can be sudden or more progressive. To learn more about it, click here.

Symptoms include:

Slowed brain growth leading to a small head
Problems with hand movements and also muscle coordination
No language skills and social anxiety
Uncoordinated breathing and even seizures
Tense and irritable disposition

It’s rare for patients to be able to live independently; Sophia herself depends on her family for 24/7 care, chief among them her mother Natalie.

“She’s had 22 surgeries,” Natalie told CNN. “She has a feeding tube. A colostomy bag. She has seizures and choking spells because of both the deformities and the Rett syndrome.”

Despite the complications and realities of Rett syndrome, Natalie describes her nine-year-old Sophia as a happy, strong little girl. But it seems like sometimes the bigger threat is from the outside.

In an age of Internet and social media trolls, Sophia sadly is an easy target for abuse because of her facial deformities.

“People, they seek you out and want to hurt you,” says Natalie. “There are people who go out of their way to make sure you see their cruelty.”

We have decided not to include the particular cruel tweets and messages that Natalie has received because of their disturbing nature. We are heartbroken that the Weaver family has been a target for online bullying, and do not want to give a platform to hateful messages. You can view the details here, but please be aware that the content is upsetting, hurtful, and discriminatory to people with disabilities.

These messages led Natalie on a months-long struggle to do what she’s always done, and what any mother would absolutely do: Protect her daughter. Weaver reported the tweet and asked her followers to report the post.

“I blocked it. I just hoped it was gone,” she said. “But it was never removed. The account remained.”

Then, in January, people started alerting her to the fact the tweet was still up — and the troll was still active, attracting more awful messages and responses.

Imagine, a mother just doing her best to raise children – including a child with special needs – and receiving such vile hate. Finally, Twitter came to its senses.

“[They said] they made a mistake. Twitter had it in their policy to protect people with disabilities against hate,” recalls Natalie.

However, she also recalls that they told her their reporting tool didn’t have enough space to include the disability category as a reason for reviewing a tweet. Weaver was happy that Twitter removed the hateful post, but she also wants Twitter to change the way it reviews such content – to prevent future mothers, fathers, and more from this kind of abuse.

“Twitter needs to add people with disabilities as a category in their violation reporting,” she says. “Otherwise people don’t know the appropriate category to select for hate towards people with disabilities.”

A Twitter spokesperson referred CNN to the platform’s “hateful conduct policy,” which says, “You may not promote violence against or directly attack or threaten other people on the basis of race, ethnicity, national origin, sexual orientation, gender, gender identity, religious affiliation, age, disability, or disease.”

This kind of advocacy isn’t new for Natalie. She is a founder of Advocates for Medically Fragile Kids, an organization that strives to preserve the rights of children like Sophia. She is also on the founder’s council for the United States of Care, a non-profit that fights for accessible, affordable solutions for health care.

“I think many times, people don’t even view Sophia is a person,” says Natalie. “I know it happens with other people with disabilities. And people view her as a disability, but I just want them to look at her as my child.”

I’m sure we all can agree – we see her as more than her child. We see Sophia – and the millions of others out there with a disability – as human beings deserving of every bit of happiness and opportunity.

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