Elizabeth Kadlecik was born during the height of the pandemic in June 2020 – but unknown to her parents, she had a rare genetic condition that caused her skin to severely harden
Elizabeth developed a hard crust-like skin which stopped her breathing and caused her to lose her eyelids (
Image: Natalia and Martin Kadlecik)
A baby’s dry skin turned into a hard outer ‘turtle shell’ that left her struggling to breathe.
Elizabeth Kadlecik was born during the height of the pandemic in June 2020 – but unknown to her parents, she had a rare genetic condition that caused her skin to severely harden.
Known as harlequin ichthyosis, the skin grows too quickly, with cells multiplying so rapidly, it eventually hardens to a shell-like texture – which can become as thick as a turtle’s at 8mm thick.
Sadly, Elizabeth has also lost her eyelids as well as fingers and toes during her difficult start in life.
The incredibly rare condition affects just just two in a million people – with Elizabeth believed to be the only person to suffer from it in her home country of Slovakia.
Mum Natalia was told when she was 30 weeks’ pregnant that her baby was going to be born with both mental and physical disabilities.
Doctors were unable to provide a diagnosis until birth, when Elizabeth entered the world six weeks premature – with doctors saying she would likely not survive.
Natalia said: “She came to this world in a thick and hard crust, like a turtle.”
Natalia and Martin pictured with their other children after bringing Elizabeth home
(
Image:
Natalia and Martin Kadlecik)
She was instantly rushed to intensive care as her skin around her face and chest was already hard and making difficult for her to breathe normally.
The thick layer of skin had also constricted the natural growth of her body.
But despite doctors telling parents Natalia and Martin that she wouldn’t survive, she survived after five weeks of sedation in intensive care.
However, Elizabeth has suffered the loss if her eyelids, two fingers and four toes to the condition – and is unable to regulate her body as she cannot sweat.
Natalia added: “The bandaging is quite painful and it has the tendency to bleed, because the skin on her palms is too tight.
“In the future, plastic surgery will be needed.”
“I know from other mums of kids with her condition that some people are mean and call their kids nasty names, but I don’t really know how I will react. I’m not sure if I will cry or yell when this starts to happen.
“I pray I will be prepared and I hope to stay strong for Elizabeth. This is the reason I write about her to raise awareness.”
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