Remembering Sweet Sophia: Disabled Children's Activist Natalie Weaver Announces Death of Daughter

Sophia Weaver died on Thursday. Her mother, activist Natalie Weaver, announced the 10-year-old's death on Twitter Friday.

"Our #SweetSophia left this earth last night as she spent every day of her life, surrounded by love & adoration," she wrote. "Once we pull ourselves from this shattering pain we will continue to help others in her memory."

Sophia Weaver battled a number of health complications since birth. She was born with facial deformities as well as deformities to her hands and feet, which prevented her from ever being able to walk. When she was one, she was diagnosed with Rett syndrome—a neurological brain disorder that affects development and speech, resulting in children with impaired motor skills and the ability to talk. She also suffered from Type 1 diabetes.

Throughout her life, Sophia Weaver had 29 surgeries and countless medical procedures in relation to her ailments. Her family announced the little girl was placed in hospice care in March and spent the last months of her life helping Sophia Weaver "live her best life" by checking off bucket-list activities.

"A local salon owner opened up (early) and gave Sophia the full treatment and she even got green hair extensions," Natalie Weaver told Today in March. "She absolutely loved it."

Due to her weakened immune system, she was unable to go out in public, resulting in Natalie Weaver providing round-the-clock care to her oldest of three children.

Natalie Weaver's devotion to her daughter sparked her career in advocacy. She first got involved in public service after North Carolina announced a policy that would reduce state funding for programs aimed at helping medically complex children in 2016. Through her foundations, Sophia's Voice and Advocates for Medically Fragile Kids NC, Natalie Weaver was successful in blocking the budget cuts.

Her fight against North Carolina led Natalie Weaver to advocate for disabled children on a national scale in 2017. However, she took her advocacy up a notch to lobby for human rights and acceptance of people with deformities and disabilities.

Natalie Weaver and her daughter caught national attention when she went head-to-head with Twitter after someone posted a message advocating for coerced abortion and attached a photo of Sophia Weaver to the tweet in November 2017. The post suggested parents who willingly go through with a pregnancy when they know the child will be born with health defects—which can be discovered via amino test—should have to pay for all of the child's healthcare.

Hundreds of people responded to the tweet with cruel comments aimed directly at Sophia Weaver's appearance. "I blocked it. I just hoped it was gone," Natalie Weaver told CNN in February 2017. "But it was never removed. The account remained."

By January 2018, the Twitter troll was still active and targeting Natalie Weaver and her daughter as well as people associated with the family.

That sparked Natalie Weaver to contact Twitter directly and force them to make a change to their reporting policy to include the disability category as a cause for reviewing a tweet. Earlier Twitter policies said the company would protect against hate speech, however, there was no area within the harassment reporting tool for people to actually list disability discrimination.

Although it took some weeks, Natalie Weaver was successful and the company adapted its format to include disability reporting. Twitter also suspended the account that was trolling the family. "Thank you @TwitterSupport & @jack for listening! The account that was using my daughter's image has been suspended! Thank you to the thousands of people who reported this & supported us! Thank you for taking a stand against hate!" Natalie wrote at the time.

Following news of Sophia Weaver's death, thousands took to social media to offer their condolences.

In lieu of flowers, the Weaver family requested for supporters to send donations to Sophia's Voice, which helps families of children with disabilities cover medical expenses outside of insurance agencies coverage.

Remembering Sweet Sophia: Disabled Children's Activist Natalie Weaver Announces Death of Daughter | Culture