26 May Medically fragile NC girl ‘left this earth,’ others to be helped in her memory
Sophia Weaver suffered from Rett Syndrome and another unknown illness that took her ability to walk and talk. (Source: PHOTO COURTESY NATALIE WEAVER)
CHARLOTTE, N.C. (WBTV) – Sophia Weaver, a Charlotte-area girl who inspired a program that helps others with disabilities, has passed away. Sophia was born with a rare neurological disorder that left her unable to speak.
"Our #SweetSophia left this earth last night as she spent every day of her life, surrounded by love & adoration," Sophia Weaver’s mother, Natalie Weaver, tweeted Friday.
Natalie posted that she was scared after Sophia got "really sick really quickly" last week. A couple days before the post, Natalie wrote that Sophia woke up with a high fever and that she was "incredibly worried," but was hopeful her girl would recover soon.
For over a decade, Natalie Weaver advocated for Sophia, who was born with facial, hand and foot deformities and numerous disabilities. Sophia had Rhett syndrome – a a rare neurological disorder occurring mostly in girls and affecting the ability to speak, walk, eat and breathe, the Charlotte Observer reports.
"It basically traps you inside your body," Natalie said.
Natalie Weaver’s advocacy grew globally when she fought to hold Twitter accountable for allowing hateful messages toward Sophia.
"She was able to convince Twitter to include disability when reporting hate and discrimination," the Sophia’s Voice website reads.
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"I’m not only fighting for Sophia, I’m fighting for families who don’t have a voice and are unable to fight," Natalie said.
Natalie says no other child in the world is like Sophia.
When Sophia was born, her parents chose to cherish every second they had with their little girl.
"Always in the back of my head – I don’t know if it’s going to be the last picture we take of her or her last birthday. There’s a constant panic, and you have to learn how to calm it so you can live day to day," Natalie Weaver said previously.
Sophia and her family created a financial assistance program for others with chronic illness and disabilities. The program helped with providing families with medical equipment to helping with medical debt, all through "Sophia’s Voice."
"Our mission is to normalize facial differences and profound disabilities. We believe unconditional love, respect and support can create a more accepting, kind and inclusive world," a statement on the Sophia’s Voice website reads.
[ Mother fighting back after state threatens to cut assistance for medically fragile children ]
In lieu of flowers, the Weaver’s are asking for donations to Sophia’s Voice.
"Once we pull ourselves from this shattering pain we will continue to help others in her memory," Natalie Weaver posted Friday.
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Our #SweetSophia left this earth last night as she spent every day of her life, surrounded by love & adoration. In lieu of flowers, we ask that you donate to https://t.co/EmzKKAEEc3 Once we pull ourselves from this shattering pain we will continue to help others in her memory pic.twitter.com/fvZBo9xqRW
— Natalie Weaver (@Nataliew1020) May 24, 2019
Sophia’s Voice has helped 4 dozen people by providing support for disability rights advocacy, paying for medical equipment, supplies, debts, & so much more! We’ve also provided respite and joy and we couldn’t have done it without you! Thank you for your support! #SophiasVoice
— Sophia’s Voice (@Sophias_Voice) March 26, 2019