Sophia Weaver, a disabled North Carolina child who both inspired adults with her spirit and rallied them to her defense when she was attacked online, has died.
Sophia was 10.
“Our #SweetSophia left this earth last night as she spent every day of her life, surrounded by love & adoration,” her mother Natalie Weaver wrote Friday on Twitter.
Sophia was at the center of a social media storm in December when a Tacoma woman sent Natalie Weaver hateful messages.
Sophia had Rett syndrome, a neurological disorder. In February, her family placed her in hospice care after the latest of 29 surgeries.
“This last surgery made it clear to us that Sophia’s body is tired and we always said we would listen to what her body is telling us and respect that, no matter how hard it is for us,” Weaver wrote Feb. 20.
Weaver is a well-known advocate for children with disabilities. She is the founder of Sophia’s Voice, a non-profit that helps people with chronic illnesses and disabilities get their medical needs met.
“Once we pull ourselves from this shattering pain we will continue to help others in her memory,” Weaver said Friday.
Weaver’s advocacy has attracted many admirers, including former president Barack Obama.
“Thanks for everything you’re doing for Sophia and so many others,” Obama tweeted to Weaver in April.
She has also attracted critics.
The Tacoma-related events unfolded in early December when Weaver posted a Christmas photo of her family on Facebook. It included Sophia, who had facial, hand and feet deformities.
A Tacoma woman, Kelsey Monahan Saum, responded shortly after.
“If you TRULY loved her, you’d go the selfless & empathetic route by putting her out of her misery,” Saum wrote on Facebook. She ended it with: “I hope you got sterilized so you can’t produce anymore defective offspring.”
“Next to the death threats, this was in the top five of the most offensive comments I’ve received,” Weaver told The News Tribune in December.
Outrage over Saum’s post was instantaneous, resulting in thousands of Facebook and Twitter comments and retweets.
Saum deleted her social media accounts and lost her job.
After Sophia was placed in hospice care, her family went on a mission to give her “bucket list” experiences.
A local salon owner gave Sophia green hair extensions. “She absolutely loved it,” Weaver told NBC’s “The Today Show.”
On May 16, Weaver announced that the family had been loaned an RV for a month-long adventure to the American west. But on May 18 Sophia woke with a fever and she got sicker as the days progressed.