DISABLED siblings living on borrowed times are being attacked online by cruel trolls saying they should be ‘put down’.
Ava-Grace, four and Henry, two, from Yorkshire have both been diagnosed with two rare conditions called lissencephaly and microcephaly.
Jam PressPictured: Henry, two, and Ava-Grace, four[/caption]
Jam PressCharlotte with Ava-Grace shortly after she was born[/caption]
Jam PressTom Harding with Ava-Grace during her battle with sepsis June 2021.[/caption]
Health problems associated with the illnesses often makes lifespan shorter – with the tots given an average predicted lifespan of just 10 years old.
Charlotte Smith, 29, and her partner, Tom Harding, 26 were left “traumatised” after their children’s diagnoses.
“We both have an overwhelming fear we don’t have long left with our children,” Charlotte said.
Microcephaly is characterised by a smaller than average head, usually due to an under-developed brain, and affects one in every 10,000 babies.
Meanwhile lissencephaly is a rare, gene-linked brain malformation which has an average life span of 10 years.
In a bid to educated others on the conditions, Charlotte began posting videos of the siblings on TikTok – only to receive a flood of hateful comments.
“We’ve had people leave harsh comments such as: ‘Can’t wait to pay for these vegetables for the rest of my life’ because we’re on disability allowance,” the mum of two said.
“Others have said: ‘They need putting down, no quality of life’ and it’s hurtful, but we try not to listen to them.
“Instead, a lot of the toxic comments are deleted, but we still don’t understand why people feel the need to do this.”
Since their tragic diagnoses, the children’s have suffered a whole host of health issues and close shavings with death.
In June 2021, Ava-Grace developed a life-threatening chest infection and then sepsis, which landed her in hospital.
Charlotte said: “I remember thinking we had lost her, as the sense of helplessness was crushing.
“About a week later, she woke up and that gave us a sense of joy.”
Meanwhile little Henry suffered with a dangerously slow heart beat – otherwise known as bradycardia.
“I remember the doctors being unsure they would be able to get his heart rate back up, as it was dropping fast, where I had to call Tom to get the hospital quickly as they weren’t sure he would make it.
“Amazingly, the doctors managed to stabilise him and he recovered quickly.
“Just when you think you’ve lost your babies, an unreal feeling of relief hits you as they wake up.”
As they’ve grown older, the twin’s condition has progressed, and the couple are now unable to return to work due to being full-time carers.
“They can’t hold their heads up and can’t really move in at all,” Charlotte said.
“Our social lives are non-existent, mainly because we’ve always got to be around incase they need to go hospital quickly – our daily lives are solely focused on the kids.”
Luckily, they receive funding from the council and disability living allowance to ensure finances are covered and are currently looking at a specialised school for both tots.
They have also been assigned healthcare workers to help with the daily needs of their plucky tots and have also received life-changing help from New Life, a charity which helps fund new technology for disabled children.
“It’s taken a while to get to a level of peace, where I’d say we’re both happy and content,” the mum said.
“Most parents celebrate when their children walk or talk, but we can celebrate the smaller things like a smile or giggle during play times,” she added.