Wednesday, January 18, 2023

Cruel trolls say our disabled children should be put to sleep – they’re living on borrowed time

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DISABLED siblings living on borrowed time are being attacked online by cruel trolls who say they should be ‘put down’.

Ava-Grace, four, and Henry, two, from Yorkshire, have both been diagnosed with two rare diseases called lissencephaly and microcephaly.

Health problems associated with the diseases often shorten lifespans – with young children having an average predicted lifespan of just 10 years.

Charlotte Smith, 29, and her partner, Tom Harding, 26, were “traumatized” following their children’s diagnoses.

“We both have an overwhelming fear that we won’t be staying with our kids much longer,” Charlotte said.

Characterized by a smaller than average head, usually due to an underdeveloped brain, microcephaly affects one in 10,000 babies.

Lissencephaly is now a rare, genetic brain malformation that has an average lifespan of 10 years.

To educate others about the conditions, Charlotte began posting videos of the siblings on TikTok – only to receive a barrage of hateful comments.

“We’ve gotten people leaving harsh comments like, ‘I can’t wait to pay for these vegetables for the rest of my life,’ because we’re on disability benefits,” the mother-of-two said.

“Others have said, ‘You need to be knocked down, not quality of life’ and it’s hurtful, but we try not to listen to them.

“Instead, many of the toxic comments are being deleted, but we still don’t understand why people feel the need to do so.”

Since their tragic diagnoses, the children have suffered from a variety of health conditions and have come very close to death.

In June 2021, Ava-Grace developed a life-threatening chest infection and then sepsis, which took her to the hospital.

Charlotte said: “I remember thinking we lost her because the sense of helplessness was overwhelming.

“About a week later she woke up and that gave us a sense of joy.”

Meanwhile, little Henry suffered from a dangerously slow heartbeat – also known as bradycardia.

“I remember the doctors not being sure if they could get his heart rate back up as it was dropping rapidly where I had to call Tom to get to the hospital quickly as they weren’t sure if he would make it.

“Amazingly, the doctors managed to stabilize him and he recovered quickly.

“Just when you think you’ve lost your babies, you get an unreal sense of relief when they wake up.”

The twin’s condition has deteriorated with age and the couple are now unable to return to work as they are full-time carers.

“They can’t hold their head up and they can’t really move at all,” Charlotte said.

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