Only two months after the Weavers started hospice for their daughter, Sophia, the 10-year old passed away after developing a high fever. Her mother, Natalie Weaver, an activist for people with disabilities, shared the news on social media.
“Our Sweet Sophia left this earth last night as she spent every day of her life, surrounded by love & adoration,” she wrote. “Once we pull ourselves together from this heart shattering pain we will continue to help others in her memory.”
While Weaver always advocated for Sophia, she gained supporters when she challenged Twitter on its harassment reporting policies. Sophia had Rett syndrome, Type 1 diabetes and severe facial deformities and underwent 30 surgeries in her short life. After someone used a picture of Sophia in a cruel eugenics meme, Weaver took on Twitter. The company eventually changed its policy to include disability harassment in its reporting tools.
While Sophia couldn’t talk much, she made her feelings known, often with a dramatic eye roll. Once she called Weaver “annoying” and her mom was thrilled by the insult (and admitted she could be annoying). Sophia was known to utter “hell yeah!” when excited like her mother. She loved mysteries and scary stories and enjoyed playing with her siblings.
“We just have fun together,” Weaver said in 2018.
After standing up to Twitter, Weaver continued her advocacy for Sophia and others with disabilities.
“I want people to see how inaccessible the world is for people with chronic illness and disability,” she said.
When the family decided it was time for Sophia to receive hospice care, Weaver shared this story to educate others. Sophia enjoyed many adventures in that short time. She saw a movie in a theater, had her hair styled in a salon, visited the Georgia Aquarium, went to the Charlotte Symphony and spent time with a pony and a therapy dog. Most of these experiences were firsts for Sophia, whose weakened immune system prevented her from being in public.
“She absolutely loved it,” Weaver said.
At the Mint Museum, Sophia saw a painting of President Barack Obama. Weaver shared a photo of the moment on social media. President Obama responded.
“It wasn’t just me fighting for the ACA, Natalie, it is millions of people like you. Thanks for everything you’re doing for Sophia and so many others,” he wrote.
Weaver couldn't believe it: “This was unexpected. It’s not every day that Barack Obama ends up in your comments section!”
Weaver plans to continue her advocacy after Sophia's death.
“I still want to change the world for the better,” she said. “There is so much more good in life than bad.”