Natalie Weaver always hoped to have more time with her daughter, but the designs of the afterlife are inscrutable. Little Sophia, who became an ambassador for diversity, respect for life and equality, finally died on May 23 at the age of 10, due to her rare disease, Rett syndrome.
Almost a month after her painful departure, her mother has turned to social media to keep her daughter’s legacy alive, a great fighter who not only had to face the ravages of her rare disease, but also countless criticisms.
Many used her image to promote the interruption of pregnancy due to the risks of malformations, but her brave mother fought until the end, obtaining massive support from organizations and companies that, despite all the damage caused, offered to do their bit to help. May Sophia have her best last days.
The Winnebago company even offered the family one of its giant vans to take Sophia on the ultimate family road trip, but sadly, the little girl died before she could take the trip of her dreams. However, they agreed to let her mother Natalie and her husband Mark take her other children: Alex, 8, and Lyla, 5, to honor her daughter’s memory.
At that point, they had made the difficult decision to stop taking extreme measures to prolong their daughter’s life. They were heartbroken.
“She was in hospice here at the house, and we promised her we would never take her back to the hospital. I snuggled in bed with her, holding her, snuggling next to her, and that’s when she breathed her last,” says his devastated mother.
Sophia could not walk or talk, had trouble eating and sometimes even breathing due to the degenerative disorder caused by her rare syndrome. She had endured 30 surgeries, and when she went into respiratory failure after her last intervention, her parents decided she had enough.
“It was probably the hardest decision we’ve ever 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 immune system made it difficult,” she adds.
But his parents would make sure he had the best last days on earth and that they really counted. Among the activities they planned for her little one were: taking her to a beauty salon for the first time, visiting an aquarium, an art museum, a roller skating rink, and even watching a movie in a real theater.
“She smiled the whole time. We had told her, ‘Let’s have fun for the rest of your life!’ I told her no more doctors, no more hospitals. And although she could barely speak, when we told her that, she replied: ‘everything ready?'”
Natalie claims Sophia lives at the nonprofit the family started, called “Sophia’s Voice,” which helps other children with special needs and their families. In the last year, they have worked with 50 families to help pay for medical equipment and supplies.
“I’ve received messages from people all over the world saying that Sophia gave them strength. I wish I had more time to change the world for Sophia and people like her. There is still a lot of hate towards people with deformities, and for a few brief moments I felt like I’ve had an impact, and I hope my daughter is proud of me, but I wanted to do more… I wish she were here to see the world accept her,” Natalie concludes.
She shares the moving story of this mother who never tires of staying true to her daughter’s legacy and continues to fight to make this world more humane, more inclusive and compassionate.
