Mark and Natalie Weaver from Charlotte, North Carolina, are blessed to have three beautiful children. Sophia, who is the eldest, was diagnosed at birth with a very rare condition.
Now 9-years-old, Sophia suffers from Rett syndrome, a rare non-inherited genetic postnatal neurological disorder that occurs almost exclusively in girls and leads to severe impairments, affecting nearly every aspect of the child’s life: their ability to speak, walk, eat, and even breathe easily. Sophia is constantly in and out of hospital and has underwent numerous surgeries.
Her Mother Natalie reveals that the family regularly receive hateful comments and stares due to Sophia’s severe facial deformities.But it was a poster that Natalie happened upon one day that horrified her, she thought enough was enough and decided to action. A sick individual on Twitter had defaced a picture of Sophia in an evil and vile manner…
When she and her significant other, Mark, chose to start a family together, they never envisioned their firstborn would be born with a rare unimaginable condition. Sophia who is now 9-years-old suffers from a rare brain disorder known as Rett syndrome.
Rett syndrome is a rare, severe neurological disorder that affects mostly girls. It’s usually discovered in the first two years of life, and a child’s diagnosis with Rett syndrome can feel overwhelming.
Rett syndrome signs and symptoms include: Slowed growth. Brain growth slows after birth. Loss of normal movement and coordination. Loss of communication abilities. Abnormal hand movements. Unusual eye movements. Breathing problems. Agitation and irritability. Other abnormal behaviors. Sophia also suffers from facial deformities.
“She is the strongest human being I know,” Natalie says.
Sophia is loved unconditionally by her little brother and sister.
As an infant Sophia would constantly be stared at by other people, Natalie says the “hate and stares” they received were so hurtful that she hid away in darkness for several years.
However, just over a year ago, Natalie decided enough was enough and took a stand against the hateful attitudes and misconceptions people have towards innocent little children like her daughter. “I will not be silenced by hate,” she declared.
Natalie has since become a campaigner for children who are medically fragile and suffer from disabilities. She helped to establish Advocates for Medically Fragile Kids NC. As per the site, the association works with administrators and policy makers to guarantee they are fully informed on the hardships and effect on families.
Natalie is also canvassing for financial assistance for families with medically fragile children. #MedicaidMatters because it covers necessary equipment for kids w disabilities that private insurance won’t,” she wrote on Twitter. “This stander allows Sophia to stand, strengthen, build muscles & enjoy a dance party. Prv. Ins covers 0% Medicaid covers 100%”
Very recently, Natalie was left horrified after she discovered what a twitter troll had posted to the social media platform. The user had stolen a photo of Sophia and was using it to promote eugenic abortions, a measure taken to avoid or prevent the birth of a defective child. The message read: “It is okay to think that every child matters however a lot of them do not hence the amino test. It should be a mandatory test and if it proves negative and the woman does not want to abort then all bills accrued after that is on her and the father.”
Natalie was absolutely outraged when Twitter refused to ban the user, stating that in their view there was nothing wrong with the poster that was used.
She was so outraged by the manner in which Twitter had dealt with the matter, she took to her own Twitter page to share her story. “Just received an email that Twitter doesn’t think a person using my child’s image as the poster child to ABORT & to weed out all the ‘defectives’ in utero is a violation.”
Her message gained an incredible response with thousands of people showing their support for Natalie.
Twitter quickly changed its tune after the backlash they received from it users, they suspended the troll’s account, and responded to Natalie again: “Hateful imagery will now be considered sensitive media under our media policy. We consider hateful imagery to be logos, symbols, or images whose purpose is to promote hostility and malice against others based on their race, religion, disability, sexual orientation, or ethnicity/national origin. If this type of content appears in header or profile images, we will now accept profile-level reports and require account owners to remove any violating media.”
“Tonight, Mark and I got matching tattoos of Sophia’s actual heartbeat w/ a shooting star. We saw one the night before she was born thru the hospital window.
“I took it as a sign that things would be ok and they were. She’s a gift”
Natalie and her family will keep on fighting for Sophia and the privileges of people with disabilities. This is one fight she has legitimately won.
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