Mom Natalie Weaver is an advocate for children with medical issues. She also happens to have a 9-year-old daughter named Sophia.

Natalie Weaver

Sofia was born with Rett syndrome.

CNN reports that it’s a “neurological disorder that impairs brain development” which affects language and motor skills. Sophia, who was born with facial, hand, and foot deformities, was diagnosed with the condition when she was 5 years old. And although the girl can’t talk, she communicates with her eyes and by making sounds.

So far, little Sophia has already undergone 22 surgeries.

Weaver told CNN:

“She has a feeding tube. A colostomy bag. She has seizures and choking spells because of both the deformities and the Rett syndrome.”

Weaver explained to KTHV that Sophia’s condition is extremely unique:

“It makes you unable to walk, talk and do things for yourself … There’s no one else in the world like her with the combination of conditions, and there’s no one else in the world who looks like her, so we are learning as we go.”

The girl’s family is dedicated to caring for Sophia, who requires care 24/7. But not everyone has shown her the same care and concern.

Weaver told CNN that people tell her every day that Sophia should “never have been born.” KTHV reports that the Weavers experienced hostility from people on a daily basis because of Sophia’s medical condition.

Weaver said:

“My world just felt like it crashed down. We tried to take her out and were met with stares and cruelty that destroyed me.”

Natalie Weaver

Weaver co-founded “Advocates For Medically Fragile Kids NC,” which works to protect the rights of children like Sophia.

Weaver told Dearly:

“We decided to start our group almost two years ago when our state was planning to decrease services for kids with complex medical needs. We fought this and stopped our state from reducing services within 6 weeks.”

Natalie Weaver

Weaver added that she has become extremely vocal in the discussion on healthcare, speaking with U.S. senators and serving on panels to discuss healthcare bills that would affect children with “complex medical needs.”

Protecting children like her daughter is Weaver’s passion. So she said it was both shocking and disturbing to receive an online message in November from someone who used Sophia’s photo in a post promoting “eugenics for individuals with disabilities,” amniocentesis tests, and abortion when the baby is found to have medical issues.

Natalie Weaver

Weaver told Dearly that the person who used the photo in this cruel manner specifically wanted Weaver to see the post. Seeing Sophia’s photo used in this way was deeply hurtful.

She said:

“The person found me to make sure I saw the tweet and also sent me a direct message. I tried to remain strong at first. I tried to push it away but about an hour later I began to cry. It was extremely painful to see my daughter’s image being used in such a hateful way. My heart was crushed. It also brought back all the hateful comments I had been receiving over the past year of fighting to protect healthcare for Sophia and other children like her.”

According to CNN, Weaver blocked the tweet and immediately wrote to Twitter, asking them to remove the post and take action against the poster. She asked her followers to also report the tweets to Twitter, in the hopes that the comments would be removed.

But the post and the user were not removed. In fact, it inspired additional comments promoting eugenics for individuals with disabilities:

CNN reports that in January, Twitter finally took down the posts and informed Weaver that Twitter doesn’t have an option to report abuse directed towards disabled people because “their reporting tool didn’t have enough space to include the disability category as a reason for reviewing a tweet.”

Weaver told Dearly that parents can help protect vulnerable, medically fragile children against hate by talking with their kids about individuals with special needs.

Weaver said:

“People can … teach their kids about others with different types of disabilities, teach them acceptance and also teach them that they are people just like them. Many times people only view Sophia in terms of her disabilities and they do not even acknowledge the fact that she’s a human being.”

Weaver had a strong message for people like the Twitter troll who used Sophia’s photo to promote eugenics.

Weaver told Dearly:

“I … would tell them they are wrong and to open their eyes and hate filled hearts. I would tell them that my child deserves life and love just as much as any typical child. People with disabilities add value to this life and the people who love them. My child has an incredibly meaningful and wonderful life, despite her challenges.”

Weaver told KTHV how much Sophia means to her— and that she deserves to be here as much as anyone else.

Natalie Weaver

Weaver said:

“She’s Sophia — she’s amazing. She’s meant to be here, she’s a wonderful human being — she’s made me a better human being.”

One has to appreciate the extent that Weaver has gone to protect her daughter and the countless children across the U.S. who are in need a strong voice to speak out on their behalf.

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