Sophia Weaver, 10-year-old who was bullied for facial deformities and inspired support for disabled children, passes away
The North Carolina born child was suffering from Rett syndrome and was born with facial, hand and foot deformities. Her mother, Natalie Weaver vowed to advocate for disabled children
Sophia Weaver, the North Carolina child, who's restrictive abilities made her a rallying point for activists passed away on Thursday. She was 10 years old.
“Our #SweetSophia left this earth last night as she spent every day of her life, surrounded by love & adoration,” her mother Natalie Weaver wrote on Twitter the next day.
Sophia had Rett syndrome, a neurological disorder which typically becomes apparent after 6 to 18 months of age in females.
According to the New York Post, the disease eventually compromises the ability to walk, talk, eat and breathe; life expectancy, though not well studied, is reduced.
Sophia was born with facial, hand and foot deformities, along with type 1 diabetes. She was placed in hospice care this February after 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 on February 21.
"Sophia was the “strongest human being I know,” Natalie Weaver said of her daughter in a YouTube video in January.
According to The News Tribune, 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 added in her tweet.
Weaver's advocacy attracted many admirers including former President Barack Obama who had tweeted in April: “Thanks for everything you’re doing for Sophia and so many others."
Soon after she was placed in hospice care, the family went on a mission to fulfill her "bucket list". One of it was green hair extensions done by a local salon owner.
Talking to NBC's 'The Today Show', Weaver said: "Sophia absolutely loved it".
On May 18, Weaver announced that the family had been loaned an RV to take her on a month-long tour to the American West, but Sophia woke with a fever and had got sicker as the days progressed.
Last December, a picture of Sophia on Twitter led to a harsh comment by a Tacoma based woman, Kelsey Monahan Saum who said, "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 any more defective offspring."
The outrage was immediate and what followed was a massive barrage of comments and retweets that led to Saum deactivating her account. It was also revealed that she lost her job.