On May 20, 2019, 10-year-old Sophia Weaver passed away after a sudden illness.
She was currently in hospice care, but doctors and her family had expected her to live for as long as another year.
Instagram | @nataliecweaver
Parents Of Daughter With Rett Syndrome Talk About Making Her Final Days Count
Sophia was dealt a tough hand from the start.
Instagram | @nataliecweaver
She was born with severe deformities to her face, hands, and feet. Then, when she was a year old, she was diagnosed with Rett Syndrome, a degenerative disorder that affected the development of her motor functions.
She couldn't walk or talk, and even eating and breathing was difficult.
Still, her family never gave up on her.
Instagram | @nataliecweaver
In her short life, Sophia had 30 different surgeries, each one more harrowing than the last. Finally, after a near miss with respiratory failure, her parents Natalie and Mark decided that they wouldn't subject her to any more surgeries.
Instead, they entered her into hospice care and decided to make every moment count for as long as they could.
Instagram | @nataliecweaver
"I thought we had at least a year – I really did. We had more adventures scheduled," Natalie told People.
They wanted to let Sophia experience as many things as possible, even if it meant being in public.
Instagram | @nataliecweaver
Sophia's earlier years had been painful, especially after internet trolls used a photo of her in a meme promoting abortion.
In fighting the trolls, Natalie forced Twitter to update their hate speech guidelines to include acts against those with deformities.
Instagram | @nataliecweaver
She also used the sudden publicity to launch Sophia's Voice, a non-profit organization devoted to increasing awareness of people dealing with disfigurements and ending the stigma that keeps many of them from living full lives.
In the first few months of 2019, the family began #SweetSophiasAdventures.
Instagram | @nataliecweaver
The adventures came in different shapes and sizes, from Sophia's first visit to a hair salon or movie theater, to trips to art galleries and the aquarium. She even got to go rollerskating.
"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 even though she could barely talk, when we told her that, she said, 'all done?'"
Donations and ideas poured in for her adventures and Winnebago even offered the family a giant RV for the ultimate road trip.
Instagram | @nataliecweaver
Unfortunately, Sophia didn't live to take that trip, but her parents and two younger siblings will go in her honor.
"Our family is going live out this last promise to Sophia — she will be with us in spirit."
But right now, the family is grieving together.
Natalie says that she's going to keep on fighting for children like Sophia:
"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."
h/t: People
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