Sophia Weaver’s parents made her last 10 days on earth really count
Natalie Weaver thought she would have a lot more time with her daughter, but the designs of the afterlife 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 disease, Rett syndrome.
Almost a month after her painful departure, her mother has taken 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 countless criticisms.
Many used her image to promote the termination of pregnancy due to the risk of malformations, but her brave mother fought until the end, obtaining massive support from organizations and companies that, given all the damage caused, offered to do their bit so that Sophia would have her best last days.The Winnebago company even offered the family one of her 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.
“Our family is going to live this last promise to Sophia: she will be with us in spirit.”
“I thought we had at least a year, I really did. We had more adventures scheduled,” said the 38-year-old mother.
In January, they had made the difficult decision to stop taking extreme measures to prolong the life of her daughter. 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 crawled into bed with her and I was holding her, curled up next to her and that’s when she breathed her last,” recounts her devastated mother.Sophia couldn’t walk or talk, she had trouble eating and sometimes even breathing because of the degenerative disorder caused by her rare syndrome. She had endured 30 surgeries and when she went into respiratory failure after her last procedure, her parents decided she had enough.
“It was probably the hardest decision we’ve ever had to make in our lives,” confesses Natalie.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, they called her a monster and her immune system made it difficult.”
But her parents would make sure that she had the best last days on earth and that they really counted. Among the activities they planned for the little girl were: taking her to a beauty salon for the first time, they went to an aquarium, an art museum, a roller skating rink, and even watched a movie in a real theater.
“She smiled the whole time. We had told him, ‘Let’s have fun for the rest of your life!’ I told him no more doctors, no more hospitals. And even though she could barely speak, when we told her that, she said, ‘all set?’”
Natalie says Sophia lives in the non-profit organization the family started, 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 have received messages from people all over the world who say that Sophia gave them strength. I wish I had more time to change the world for Sophia and people like her. There’s still a lot of hate towards people with deformities, and for a few brief moments I felt like I’ve made an impact and I hope my daughter is proud of me, but I wanted to do more…I wish she was here to see the world accept her.” concludes Natalie.
She shares this mother’s moving story that she never tires of staying true to her daughter’s legacy and she continues to fight for this world to be more humane, more inclusive and compassionate.