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Update: Sophia passed away in May of 2019 surrounded by her loved ones. Natalie Weaver continues to use her voice to advocate for people with disabilities.

Natalie Weaver's holiday photo should have been received with joy like any other family's. Instead, a vile commenter attacked her and her daughter Sophia.

The photo shows Weaver's husband Mark sitting in front of the tree with their 10-year-old daughter, Sophia. As Sophia gazes at the tree in wonder, her smiling dad helps her hang an ornament. It's a sweet photo of a father and his obviously unique daughter sharing a warm holiday moment.

But one woman saw something else—an opportunity to spew hatred and prejudice toward a child with profound needs.


Weaver received a vile message in response to her photo. But rather than ignore it, she published the comment so that people could see what kind of stigma and unkindness people with disabilities can face.

Unfortunately, such comments are not all that uncommon for Sophia's family.

Sophia's deformities and disabilities make her one of a kind, but they aren't what define her.

Sophia was born with facial, hand, and foot deformities. Weaver says she's the only person in the world with her features, and also the only person in the world with her combination of conditions.

"Each year has brought a new diagnosis for Sophia," says Weaver. Her health challenges include an extremely rare immune deficiency, Type 1 diabetes, and Rett Syndrome, a neurological disorder that causes seizures, breathing disorders, tremors, and many other issues, and has left Sophia unable to walk, talk, and use her hands. She needs around the clock care.

But Sophia is so much more than a child with profound needs. She's a daughter, a sister to two younger siblings, and in some ways, a typical sassy 10-year-old.

"Though she goes through a lot," says Weaver, "she is the strongest person I know. She handles it all with a smile and laughs a lot. She has an attitude, rolls her eyes at me and is silly! When her body calms, and the neurological storms pass (this can last a minute, days and weeks) sometimes she surprises us with a word like 'annoying' (she was calling me that!)."

Weaver says that Sophia has brought a lot to their family:

"Though we experience heartache and struggles, Sophia has changed our lives for the better. She makes our live richer, fuller and filled with love. She's taught us to live in the moment and to appreciate the small things. She is my child, and I love her just the same as any other parent loves their child. It seems some people don't understand that. Society has defined beauty, and value but because of Sophia I now have my own definition, and I know what true beauty and value are. Sophia is beautiful, and valuable, and is filled with so much happiness and love. She deserves respect and dignity just like everyone else."

"People often tell me to kill my child, to put her out of her misery . . ."

Weaver decided years ago that she wasn't going to hide her daughter away from the world. She became an advocate for people with disabilities and deformities and shares her family's life with Sophia openly on social media.

Unfortunately, living openly with differences sometimes means receiving horrible, vile comments from the dregs of humanity.

"I've received a lot of comments since I decided to share a glimpse into our lives and Sophia's story to change the stigma surrounding profoundly disabled kids and in Sophia's case also facial deformities. You don't hear or see families like mine often. People often tell me to kill my child, to put her out of her misery, and that she looks horrible, scary and that she is worthless. I receive many different forms of hate speech, discrimination and even death threats against my daughter and me. Someone used her image to promote abortion. In real life, people have screamed at the top of their lungs and laughed, called her a monster, point her out, stare, whisper or pretend she doesn't exist."

Weaver says that people think there's "a magical plug to pull," but there's not. "Sophia is alive because she is strong and her body is strong," says Weaver. "We've never taken any unnecessary measures to keep her alive. We will lose her one day, but while she is here, we will take every step possible to decrease her pain and make her quality of life the best it can be, which is the only reason she's had 28 surgeries."

The idea that anyone would tell a parent their child should die is unfathomable. To imply that they should kill their own child themselves is the height of human cruelty.

We can all help fight the stigma and support people like Sophia and her family.

To learn more about battling the stigma, Weaver suggests checking out https://faceequalityinternational.org, an organization founded by a man with a facial disfigurement and which seeks to create "a world where everyone is treated fairly whatever their face looks like."

Weaver also founded Sophia's Voice, a non-profit organization in Sophia's honor, to help others by providing medical assistance and equipment to people with disabilities, and she has dedicated her Twitter, Facebook, and Instagram accounts to sharing a glimpse into her family's life to change the stigma surrounding kids with facial deformities and profound disabilities.

"I was a very private person for the first 7.5 yrs of Sophia's life because of people like the lady who made this public comment," says Weaver. "Once I decided to no longer hide, I have made it my mission to fight for the dignity and respect that profoundly disabled people and people with facial deformities deserve."

Health

A child’s mental health concerns shouldn’t be publicized no matter who their parents are

Even politicians' children deserve privacy during a mental health crisis.

A child's mental health concerns shouldn't be publicized.

Editor's Note: If you are having thoughts about taking your own life, or know of anyone who is in need of help, the 988 Suicide & Crisis Lifeline is a United States-based suicide prevention network of over 200+ crisis centers that provides 24/7 service via a toll-free hotline with the number 9-8-8. It is available to anyone in suicidal crisis or emotional distress.


It's an unspoken rule that children of politicians should be off limits when it comes to public figure status. Kids deserve the ability to simply be kids without the media picking them apart. We saw this during Obama's presidency when people from both ends of the political spectrum come out to defend Malia and Sasha Obama's privacy and again when a reporter made a remark about Barron Trump.

This is even more important when we are talking about a child's mental health, so seeing detailed reports about Ted Cruz's 14-year-old child's private mental health crisis was offputting, to say it kindly. It feels icky for me to even put the senator's name in this article because it feels like adding to this child's exposure.

When a child is struggling with mental health concerns, the instinct should be to cocoon them in safety, not to highlight the details or speculate on the cause. Ever since the news broke about this child's mental health, social media has been abuzz, mostly attacking the parents and speculating if the child is a member of the LGBTQ community.

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Science

Dyslexic plumber gets a life-changing boost after his friend built an app that texts for him

It uses AI to edit his work emails into "polite, professional-sounding British English."

via Pixabay

An artist's depiction of artificial intelligence.

There is a lot of mistrust surrounding the implementation of artificial intelligence these days and some of it is justified. There's reason to worry that deep-fake technology will begin to seriously blur the line between fantasy and reality, and people in a wide range of industries are concerned AI could eliminate their jobs.

Artists and writers are also bothered that AI works on reappropriating existing content for which the original creators will never receive compensation.

The World Economic Forum recently announced that AI and automation are causing a huge shake-up in the world labor market. The WEF estimates that the new technology will supplant about 85 million jobs by 2025. However, the news isn’t all bad. It also said that its analysis anticipates the “future tech-driven economy will create 97 million new jobs.”

The topic of AI is complex, but we can all agree that a new story from England shows how AI can certainly be used for the betterment of humanity. It was first covered by Tom Warren of BuzzFeed News.

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This article originally appeared on 04.15.19


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