The last days of the 10-year-old girl who was born with a rare condition

Sophia spent the last days of her life accomplishing what she had been deprived of for ten years. The girl was born with a rare degenerative syndrome – Rett Syndrome – which causes malformation of the face, hands and feet, as well as difficulty breathing and eating and the inability to walk and talk.

Sophia, in ten years of life, faced 30 surgeries, until in her last operation, after suffering a respiratory failure, her parents, Natalie Weaver and Mark, decided it was time for the medical interventions on his body to cease.

“It was probably the hardest decision we’ve ever had to make in our lives. I knew I had to listen to her body,” said her mother. “She was being cared for at home and we promised her that we would never take her back to the hospital again. I climbed up to her bed and hugged her. That’s when she took her last breath.” The child died in May.

The first time away from home

In keeping with their promise, Natalie and Mark decided that, for the first time in ten years, Sophia would leave the house. “People have always been cruel [quando ela ia a público]they called her a monster and also her immune system didn’t help,” the mother told PEOPLE.

In her last days, the family took the girl to a beauty salon for the first time. They also visited an aquarium, an art museum, went to the movies and even took Sophia rollerblading.

“She smiled the whole time. We told her ‘Let’s have fun for the rest of her life!’ I told her that there would be no more doctors and no more hospitals. And even though she couldn’t speak properly, when we told her that, she said, ‘Is it all over?’” Natalie said.

national notoriety

The story of Sophia and her mother became nationally famous when Natalie began advocating for children with disabilities. Even the former president of the United States, Barack Obama, praised the mother’s activism on her Twitter.

Natalie was also able to convince Twitter to change its hate speech policy after users used her daughter’s photo to advocate for abortion, and is currently working to change the same policy on Instagram.

Sophia gained people’s sympathy mainly after her mother told her followers about the adventures that the two would undertake in their last days of life. Many responded to the tweet with suggestions and donations. The Winnebago company even offered the family a large van to take Sophia on a trip.

Legacy

Sadly, Sophia passed away before the family could make the trip. However, the company agreed to take Natalie, Mark and their other two children – Alex, 8 years old and Lyla, 5 – to carry out the adventure. “Our family will fulfill the last promise we made to Sophia and she will be with us through her spirit.”

Furthermore, Natalie advocates that Sophia stays alive through the non-funded organization the family started, ‘Sophia’s Voice‘ (Voice of Sophia), whose goal is to help other children with disabilities and their families.

Last year alone, they worked with 50 families helping them pay for medical equipment and supplies. When Sophia’s death was announced on social media, followers raised more than $40,000 (about 160,000 reais) in a few days.

“We have received messages from people all over the world saying that Sophia has given them strength. I wish I had more time to change the world for Sophia and people like her,” says Natalie. “I hope my daughter is proud of me, but I wish I had done more… I wish she was here to see the world being more accepting and changing for the better”.

Read too: The story of the couple of women who breastfeed their two children together

+ She had her leg amputated at age 20 and is now successful as a dancer

Vote and choose the winners of the CLAUDIA Award