#SweetSophia: A grieving family's trip helps build daughter's legacy

With her photo on the dash, a family shares the lessons of a brief but inspiring life.

August 16, 2019 at 11:06PM
A journey out west has helped the Weaver family grieve for Sophia, shown in the photo held in front, and share her story with others. Her parents are Mark, at left, and Natalie, holding the selfie-stick. (The Minnesota Star Tribune)

The final stretch of the Weaver family's monthlong trip had them heading east toward Minnesota on Interstate 90 last week, but they turned their RV south before crossing our state's border. The bypass was Minnesota's loss.

The North Carolina family with a large social media following has a powerful story to share about a young family member's legacy. Ten-year-old Sophia, who was born with a facial deformity and other serious health conditions, died in May. The family's tour of the American West became not only a time to heal, but a way to enlarge the little girl's already widespread circle of admirers.

The trip west had been planned for some time and made possible by Iowa-based Winnebago lending the family an RV that could accommodate Sophia's disabilities. But Sophia, whose frail body had endured 30 surgeries, took a sudden turn and died at the family's home outside Charlotte.

Natalie and Mark and their two young children decided Sophia would want them to go anyway. They hit the road with a photo of her on the dashboard and the logo for Sophia's Voice, the foundation Natalie founded to assist those with medical needs and promote acceptance of those with disabilities, emblazoned on the side.

They trekked through 15 states, and the big vehicle got noticed. People who saw it followed up with the foundation to learn more about #SweetSophia, as she's known on social media. Natalie Weaver has legions of followers on Twitter and has long shared photos of Sophia enjoying her siblings, birthday parties and everyday life.

One important stop on the trip west was at Twitter's Boulder, Colo., office. Weaver, who is an influential health advocate and serves on the board of Minnesota-based United States of Care, faced appalling abuse on Twitter. Among the worst: that Sophia didn't deserve to live because of her disability. But the trolls had met their match. Outrage mounted, prompting Twitter to invite Weaver to tell its staff how they can do better.

The trip has helped the family heal, Weaver told an editorial writer. It's a comfort to know that Sophia's story is reaching new people, helping educate others about facial deformities and the joys that can be found in life for those born with profound disabilities. That's a potent legacy for a little girl. Minnesotans who don't yet know #SweetSophia have missed out, but can still learn about her at sophias-voice.com.

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