Disabled NC child’s mom: ‘I will not allow hate to silence me anymore’
The Cornelius girl whose facial deformity made her both a target of social media trolls and a symbol of public acceptance of people with disabilities has died, her mother said.
A Twitter user early last year included a photo of Sophia Weaver in a tweet “as the poster child to abort bc she’s disabled.” Sophia’s mother, Natalie Weaver, complained and the social media platform eventually apologized and clarified its rules on hate speech.
Sophia had Rett syndrome, a rare neurological disorder that occurs mostly in girls and affects the abilities to speak, walk, eat and breathe, the Associated Press has reported.
On Monday, Weaver wrote on Facebook that Sophia, 10, “got really sick really quickly and I’m really scared.”
Weaver posted an update early Friday: “Our #SweetSophia left this earth last night as she spent every day of her life, surrounded by love & adoration.... Once we pull ourselves from this heart shattering pain we will continue to help others in her memory.”
Weaver asked that, instead of flowers, donations be made to sophias-voice.com, a group she founded to help people with chronic illnesses and disabilities get medical help.
Weaver had advocated for her daughter, and for the public acceptance of other children with disabilities and facial deformities, well before the Twitter incident. She’s co-founder of the nonprofit Advocates for Medically Fragile Kids NC.
She first spoke out publicly in 2016 when she said North Carolina threatened to reduce services for children with medically complex conditions. In 2017, she argued against efforts in Congress to rescind the Affordable Care Act.
Weaver said on sophias-voice.com that she was “inundated with hundreds of hateful messages toward her daughter” as her online presence grew.
The offensive tweet that used her daughter’s photo was posted by a user Weaver has said supported eugenics. The science of controlled breeding to improve desirable genetic traits fell out of favor when it was embraced by Nazis before World War II.
Twitter initially said the tweet didn’t violate its rules, Weaver has said. It later apologized, suspended the user’s account and clarified its rules prohibiting tweets that direct hate against protected categories including disabilities.
In an interview with The Charlotte Observer earlier this month, Weaver said her family made the decision in January to halt further surgeries for Sophia and to take her off of the strong medications that made her so drowsy she could barely stay awake for 30 minutes at a time.
“In the beginning, I used to (ask) each doctor, ‘How long do I have with my child?’ No one could ever give me that answer,” Weaver said. “And then, when she was laying in that hospital (in January, after her 29th surgery), and she wasn’t responding — sitting in that room, I saw that her body is tired. We can’t keep doing this anymore.”
In February, Weaver told her 54,000 Twitter followers that, after a final procedure, Sophia would enter hospice care and face no more surgeries or hospital visits. Instead she would enjoy the things — “Sweet Sophia’s Adventures,” the family called it — that she’d never been able to experience.
“Instead of focusing on dying, I want to focus on living,” Weaver told the Observer.
She set up an email account to solicit ideas from her followers and a GoFundMe account to help pay for them. On Twitter, she documented Sophia’s experiences that brought the family, including two other children, “pure joy” over the following months:
Her first haircut in a salon instead of at home.
A private viewing of artwork at the Mint Museum that elicited squeals of excitement at her favorite pieces.
Her first trip to a movie theater to see “How to Train Your Dragon.”
A behind-the-scenes tour of the Georgia Aquarium.
A trip to the mountains. Planting a shrub with her mom. Watching the Charlotte Symphony rehearse.
The gift of a doll that, for the first time, looked like Sophia, complete with feeding tube.
Winnebago’s offer, last week, of the use of a specially-accessible RV so the family could tour the West for three weeks.
Commenters to Weaver’s tweets included Barack Obama, whose healthcare protections for people with pre-existing conditions is “why she’s alive today,” she wrote. A teacher in France wrote that her class spent a day talking about disabilities, and about Sophia with love and respect.
“There’s a community of people throughout the entire world who love and accept my family, and in the process I’m changing things, normalizing facial deformities and profound disabilities and helping people,” Weaver told the Observer. “Hillary Clinton sent Sophia a letter talking about the impact she had. President Obama responded. To have people acknowledge the work you’re doing — maybe we are having an impact on people.”