A disabled North Carolina child that was at the center of a social media storm in December when a Tacoma woman sent the girl’s mother hateful messages is now in hospice care.
“We don’t know how long she will be here with us,” Natalie Weaver wrote on a GoFundMe page for her daughter, Sophia. “It could be a year or more or less, we just don’t know.
Sophia, 10, has Rett syndrome, a neurological disorder. The decision to put her in hospice care came after the most recent of many surgeries the girl has had.
“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.
The Tacoma-related events unfolded in early December when Weaver of Cornelius, North Carolina, posted a Christmas photo of her family on Facebook. It included Sophia, who has 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.
After Saum’s Facebook response, Weaver went to Twitter to bring it to her followers’ attention.
“I don’t have the influence to expose and change this on my own,” Weaver wrote. “These people need to be held accountable for their hate!”
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.
Since the decision to move Sophia to hospice care, her family has been on a mission to give her “bucket list” experiences, NBC’s “Today Show” reported.
A local salon owner gave Sophia green hair extensions. “She absolutely loved it,” Weaver told “Today.”
The family spent a weekend in a mountain cabin and a local theater let Sophia watch her first movie at a private screening. Because Sophia has a weakened immune system, she is unable to attend public events for fear of contracting an infection.
Weaver said the family is focused on making Sophia’s remaining days pleasant ones.
“We don’t want to focus on losing our girl but instead celebrate her and give her experiences she’s never had due to all of her medical issues, 29 surgeries, procedures, therapies, appts, etc.,” Weaver wrote.