Family of 10-Year-Old Girl with Rett Syndrome Filled Her Final Weeks with Fun and Joy
Sophia Weaver, a 10-year-old girl who lived with a rare neurological condition called Rett Syndrome, spent her last weeks on earth free from hospitals and filled with fun.
Sophia’s story gained national attention when her mother, Natalie Weaver, began to fiercely advocate for children with disabilities after she learned that mean-spirited internet users were using her daughter as a poster child for abortion.
After fighting to keep Sophia as healthy as possible over the years, Weaver and her husband, Mark, decided in January that it was time to transition their daughter into hospice care.
Not knowing how much time they would have left with Sophia, the Weaver family decided to take her on as many fun adventures as possible while they could.
Sophia’s weak immune system and the constant barrage of medical appointments left her largely unable to participate in typical family activities.
When Natalie Weaver did try and take Sophia out, people said such cruel things about her daughter that Sophia’s parents decided it was better to just keep her home.
But once the Weavers decided to take Sophia off her medications and away from the unending doctor visits, they went out and enjoyed life with their smiling daughter by their side.
Sophia spent the spring visiting an art museum, aquarium, hair salon, roller skating rink and movie theater, activities she had never been exposed to before.
“She smiled the whole time. We had told her, ‘Let’s have fun for the rest of your life!'” Weaver told People. “I told her no more doctors, no more hospitals. And even though she could barely talk, when we told her that, she said, ‘all done?’”
One of the Weaver family’s most joyful days was spent at the roller skating rink.
“I was pushing her in her wheelchair,” Mark Weaver told WCNC-TV. “She loves music and she just was so happy the entire time. And for her body to hang in there for 45 minutes, full attention, no seizures, no tremors, smiling, the family surrounding us and just having so much fun. I think my face was sore from smiling.”
Sophia and her mother spent time at the Mint Museum in Charlotte, North Carolina, which opened its doors early so the pair could enjoy the museum away from the crowds.
“To know that her life is going to be spent experiencing wonderful fun moments instead of surgeries and pain and recovery and medications that make her tired and worn out it means so much to me,” Natalie Weaver said.
The Weavers had additional adventures planned for Sophia, but sadly, she passed away in May.
“She was in hospice here at the house and we’d promised her we’d never take her back to the hospital,” Natalie Weaver recalled. “I crawled into bed with her and I was holding her, curled up next to her and that’s when she took her last breaths.”
Sophia’s family is still reeling with the pain of grief, but her life and death have already helped others.
“I’ve received messages from people all over the world saying Sophia gave them strength,” Weaver said. “I wish I had more time to change the world for Sophia and people like her.”
“There is still so much hate and cruelty towards people with deformities and disabilities, and for a few brief moments I’ve felt like I’ve made an impact and I hope my daughter’s proud of me, but I wanted to do more … I wanted her to be here to see the world be more accepting and change for the better.”
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