Natalie Weaver expected to have much more time with her daughter, but the ways of the beyond are inscrutable. And little Sophia, who became an ambassador for diversity, respect for life, and equality, finally passed away on May 23 at the age of 10 due to her rare condition, Rett syndrome.
After almost a month since her painful passing, Sophia’s mother has turned to social media to keep her daughter’s legacy alive. Sophia was a great fighter who not only had to face the ravages of her rare illness but also countless criticisms.
Many used Sophia’s image to promote abortion in cases of potential birth defects, but her brave mother fought until the end, gaining massive support from organizations and companies who, despite the harm caused, offered to contribute to ensure that Sophia had the best final days.
Winnebago even offered the family one of their giant vans for a great family road trip with Sophia, but unfortunately, the little girl passed away before she could take the trip of her dreams. However, they allowed her mother Natalie and her husband Mark to take their other children, 8-year-old Alex and 5-year-old Lyla, to honor their daughter’s memory.
In January, they had made the difficult decision to stop taking extreme measures to prolong their daughter’s life. They were heartbroken.
“She was in hospice care here at home, and we promised her we would never take her back to the hospital. I crawled into bed with her and was holding her, cuddled up next to her, and that’s when she took her last breath,” shares her devastated mother.
Due to her degenerative disorder caused by Rett syndrome, Sophia couldn’t walk or talk, had difficulty eating, and sometimes even breathing. She had undergone 30 surgeries, and when she had respiratory failure after her last operation, her parents decided it was enough.
“Probably the hardest decision we have had to make in our lives,” Natalie confesses. In addition to keeping her out of the hospital, they decided to take her out in public, for the first time in years. “People had always been so cruel, calling her a monster and her weakened immune system made it difficult.”
Her parents made sure she had the best last days on earth and that they truly count. Among the activities they planned for her were taking her to a beauty salon for the first time, going to an aquarium, an art museum, a roller skating rink, and even watching a movie in a real theater.
“Throughout the time, she was smiling all the time. We told her, ‘Let’s have fun for the rest of your life!’ I said no more doctors, no more hospitals. And even though she could barely speak, when we told her that, she said, ‘All set?’”
According to Natalie, Sophia lives on through the non-profit organization that the family started, Sophia’s Voice, which helps other children with special needs and their families. In the past year, they have worked with 50 families to help pay for medical equipment and supplies.
Share the moving story of this mother who remains faithful to her daughter’s legacy and continues to fight for a more humane, inclusive, and compassionate world. She has received messages from people all over the world who say that Sophia gave them strength. Although she wishes she had more time to change the world for Sophia and people like her, she feels that for a brief moment she had an impact and hopes that her daughter is proud of her. However, she wants to do more.
There is still a lot of hate towards people with deformities, and she wishes her daughter were here to see the world accept her. Natalie concludes with her commitment to the nonprofit organization that her family started, Sophia’s Voice, which helps other children with special needs and their families. In the past year, they have worked with 50 families to help pay for medical equipment and supplies.
