Sophia Weaver had disfigurements in her face, hands and feet as well as Type 1 diabetes and Rett syndrome, a condition which impacts her speech and co-ordination.
Mum Natalie Weaver, of Cornelius, North Carolina, tweeted: “Our #SweetSophia left this earth last night as she spent every day of her life, surrounded by love & adoration.
“Once we pull ourselves from this heart shattering pain we will continue to help others in her memory.”
Natalie was left heartbroken after sick trolls used a photo of her disabled daughter in a vile pro-eugenics campaign.
Writing on Monday, the hopeful mum said: “I’m really scared. I know my girl is a fighter and can pull through this.”
Sophia had disfigurements in her face, hands and feet as well as Type 1 diabetes and Rett syndrome, a condition which impacts her speech and co-ordination.
The little girl underwent 22 gruelling surgeries in her short life, had a feeding tube and colostomy bag, and required 24-hour care.
Sadly, Sophia’s different appearance has made her a target for nasty abuse online, with various people commenting that she would be better off not existing.
Pro-eugenics believe in “improving” the genetic features of humans through selective breeding and sterilisation.
Natalie decided to take action after someone sent her a direct tweetcontaining a pro-eugenics message – with a picture of Sophia to illustrate it.
The heartless note read: “It is okay to think that every child matters, however a lot of them do not.
“Hence the amnio test… 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.”
Furious that someone had used a picture of her daughter in this way, Natalie complained to Twitter with the hope that it would be removed from the site.
But despite her reporting the message and encouraging her followers to do the same, Twitter Support claimed the tweet didn’t violate their rules or regulations.
Natalie, a healthcare advocate for children with complex medical needs, wrote back: “@TwitterSupport Just received an email that Twitter doesn’t think a person using my child’s image as the poster child to ABORT and to weed out all the ‘defectives’ in utero is a violation.
“Why? Because they won’t recognise hate towards people with disabilities in their regulations/reports.”
Eventually, after persistent battling from Natalie, Twitter apologised to her and the person who posted the nasty message was suspended.
In a follow-up email, a spokesperson for Twitter wrote: “Our goal is to create a safe environment for everyone on Twitter to express themselves freely.
“After reviewing your earlier report, it appears as though we missed a violation.
“We suspended the account you reported as it was found to be participating in abusive behaviour. We apologise for this error.”
What is Rett syndrome?
THE condition is a rare genetic disorder that affects brain development, resulting in severe mental and physical disability.
It is estimated to affect about one in 12,000 girls born each year, and is only rarely seen in males.
Almost all cases of Rett syndrome are caused by a mutation (a change in the DNA) in the MECP2 gene, which is found on the X chromosome (one of the sex chromosomes).
The MECP2 gene contains instructions for producing a particular protein (MeCP2), which is needed for brain development. The gene abnormality prevents nerve cells in the brain from working properly.
Some children with Rett syndrome are affected more severely than others. Also, the age at which symptoms first appear varies from child to child.
There’s no cure for Rett syndrome, so treatment focuses on managing the symptoms.
Rett syndrome is described in four stages, although symptoms will often overlap between each stage.
Stage one is sometimes described as ‘stagnation’ because the child’s development slows down or stops altogether. Symptoms include:
- low muscle tone (hypotonia)
- difficulty feeding
- unusual, repetitive hand movements or jerky limb movements
- delay with development of speech
- mobility problems, such as problems sitting, crawling and walking
- lack of interest in toys.
During stage two, known as ‘regression’ or the ‘rapid destructive stage’, the child starts to lose some of their abilities. This stage usually begins between the ages of one and four and may last for any time from two months to more than two years.
Signs at this stage include:
- loss of the ability to use the hands purposefully – repetitive hand movements are often difficult to control and include wringing, washing, clapping or tapping
- periods of distress, irritability and sometimes screaming for no obvious reason
- social withdrawal – a loss of interest in people and avoidance of eye contact
- unsteadiness and awkwardness when walking
- problems sleeping
- slowing of head growth
- difficulty eating, chewing or swallowing, and sometimes constipation that may cause tummy aches.
Stage three of Rett syndrome can begin as early as two years of age or as late as 10 years of age.
It often lasts for many years, with many girls remaining in this stage for most of their lives. Problems that can arise during stage three include:
- seizures, which become more common
- irregular breathing patterns may get worse – for example, shallow breathing followed by rapid, deep breathing, or breath holding
- teeth grinding
- some children may develop heart rhythm abnormalities (arrhythmias).
Stage four can last for years or even decades. The main symptoms at this stage are:
- development of a spinal curve (the spine bending to the left or right side), known as scoliosis
- muscle weakness and spasticity (abnormal stiffness, particularly in the legs)
- losing the ability to walk.
As a parent caring for a child with the syndrome, it’s likely you’ll need help and support from a wide range of healthcare professionals.