Because of a weakened immune system, Sophia Weaver, 10, can’t be in public.
Sophia has Rett syndrome, Type 1 diabetes and severe facial deformities.
She’s experienced 29 surgeries, numerous procedures and takes loads of medications.
“Typically, she handles them pretty well,” Weaver said.
For the past three years, Weaver has been advocating for her daughter and others with disabilities. She convinced Twitter to include disability discrimination in its harassment reporting tool, in response to the many hateful and violent comments she has gotten when she posts photos of Sophia.
She shares pictures to help normalize facial deformities and disabilities and started a foundation, Sophia’s Voice, which provides money to families with severely disabled children. While Weaver always fought for Sophia, she did so with her daughter’s happiness in mind.
The family doesn’t want to overwhelmed with sadness so they’re using this time to help Sophia “live her best life” by helping her experience bucket-list activities. Some of the things they’ve done are things that able-bodied people take for granted, such as going to a hair salon.
“A local salon owner opened up (early) and gave Sophia the full treatment and she even got green hair extensions,” Weaver said. “She absolutely loved it.
As the Weavers transition their daughter, Sophia, to hospice care, they’re dedicated to helping her ‘live her best life.’ She saw her first movie in a theater when a local cinema opened early for a private screening.
“All of these amazing things, she is going to be able to experience,” Weaver said.
The family has a GoFundMe to support their adventures and they’re taking suggestions from followers about what bucket list items to do. Recently, the family spent a weekend at cabin in the mountains where Sophia enjoyed a soak in a hot tub.
They hope to rent an RV and take Sophia across the United States so she can see landmarks, such as Yellowstone National Park. And, this week Sophia received a unique doll from a company called “A Doll Like Me.
Sophia’s eyes lit up with excitement when she saw her doll.
“When Sophia is no longer here I will be able to hold something that looks like her,” she said.
Weaver shares pictures on social media from their adventures to create lasting memories.
“She is doing OK.