Natalie Weaʋer 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. .
After almost a month of her painful departure, her mother has gone to social networks to maintain ʋiʋo the legacy of her daughter, 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 “encouraging mother” fought until the end, getting massive support from organizations and companies that, given all the damage caused, offered to do their bit so that Sophia could have her best last days.
The WinneƄago 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 make 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.
In January, she had made the difficult decision to stop taking extreme measures to prolong her daughter’s life. They were heartbroken.
“She is in a hospice here at the house and we promised her that we would never take her back to the hospital. I crawled into her bed with her and I was hugging her, curled up next to her and that’s when she breathed her last, “says her devastated mother.
Sophia could not walk or talk, had problems 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 surgery, her parents decided enough was 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 of it in public, for the first time in years. “People have always been so cruel, they call her a monster and her immune system made it difficult.”
But her parents would make sure she had the best last days on earth and that they really count. Among the activities they planned for the little girl they studied: taking her to a beauty salon for the first time, they went to an aquarium, an art museum, a roller skating rink, and even saw a movie in a real theater.
Natalie says Sophia ʋiʋe is in the non-profit organization the family started, Sophia ’s Voice, which helps other children with special needs and her 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 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 moments I felt that I had an impact and I hope my daughter is proud of me, but I wanted to do more… I would have wanted her to be here to see that the world accepts her”, concludes Natalie.
She shares the heartwarming story of this mother that she does not tire of remaining faithful to the legacy of her daughter and continues to fight for this world to be more humane, more inclusive and compassionate.
