Sophia Weaver was born with Rett syndrome, type 1 diabetes, and various physical differences, including facial and limb deformities.
In her ten years of life she underwent thirty surgeries. They were years marked by medical treatments and complications, but also by the love of a family that did everything possible to give her a life full of happy moments.
But there was something Sophia never chose to face: hatred. Strangers on the internet mocked her appearance, even going so far as to use a photograph of her to justify abortion.
Her mother, Natalie Weaver, said that for years she kept Sophia away from public places because of the stares and cruel comments from strangers. But about a year before her death, she decided to stop hiding her. She began sharing photographs and stories of her daughter and responding to contempt by showing her life as it truly was.
From that experience came Sophia’s Voice, an organization created by Natalie to honor her daughter and advocate for people with disabilities, making sure that love prevailed and that her story helped hundreds like her. Her work even received public recognition from Barack Obama.
In her final months, when her family decided to stop major medical interventions, Sophia was able to enjoy experiences that had previously been difficult because of her treatments: she visited a beauty salon, an aquarium, an art museum, and the movie theater, and even went skating. Her mother said that she smiled during those moments.
Sophia died on May 23, 2019, in North Carolina, at age 10. Natalie said that she had been surrounded by love and adoration every day of her life. That was her true story: not the illness or those who tried to reduce her to her appearance, but a girl who lived surrounded by love and left a mark that her family chose to turn into advocacy for others.