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."