Elizabeth Kadlecik was born at the height of the pandemic in June 2020 – but unbeknownst to her parents, she had a rare genetic condition which severely hardened her skin
Image: Natalia and Martin Kadlecik)
A baby’s dry skin turned into a hard outer “turtle shell” that made it hard to breathe.
Elizabeth Kadlecik was born at the height of the pandemic in June 2020 – but unbeknownst to her parents, she had a rare genetic condition that severely hardened her skin.
Known as harlequin ichthyosis, the skin grows too quickly, with cells multiplying so rapidly that it eventually hardens into a shell-like texture – which can become as thick as a turtle’s at 8mm thick.
Sadly, Elizabeth also lost her eyelids as well as her fingers and toes during her difficult start in life.
The incredibly rare condition affects just two in a million people – Elizabeth believed to be the only person to suffer from it in her home country of Slovakia.
Mum Natalia learned when she was 30 weeks pregnant that her baby was going to be born with mental and physical disabilities.
Doctors were unable to provide a diagnosis before birth, when Elizabeth entered the world six weeks early – with doctors saying she was unlikely to survive.
Natalia said: “She came into the world in a thick, hard crust, like a turtle.”
Natalia and Martin Kadlecik)
She was immediately rushed to intensive care as her skin around her face and chest was already hard and preventing her from breathing normally.
The thick layer of skin had also restricted his body’s natural growth.
But although doctors told her parents Natalia and Martin that she would not survive, she did survive after five weeks of sedation in intensive care.
However, Elizabeth has suffered the loss of her eyelids, two fingers and four toes – and is unable to regulate her body as she cannot sweat.
Natalia added: “The bandage is quite painful and he tends to bleed because the skin on his palms is too tight.
“In the future, plastic surgery will be necessary.”
“I know from other mothers of children with her disease that some people are mean and call their children bad names, but I don’t really know how I’m going to react. I don’t know if I’m going to cry or scream when this starts to happen.
“I pray to be ready and hope to stay strong for Elizabeth. That’s why I’m writing about her to raise awareness.