Dailygist, Feb 20th, 2022 Read original
Elizabeth Kadlecik, from Slovakia, was born with a rare condition called when she arrived prematurely with very hard, thick skin. Doctors gave her no chance of survival
A child whose parents were told she had no chance of surviving was born with skin so thick it resembled a "turtle shell."
Despite doctors' warnings, Elizabeth Kadlecik, from Slovakia, was born in June 2020 with a rare condition called harlequin ichthyosis.
Children with this condition are born prematurely with very hard, thick skin covering most of their bodies. The skin forms large, diamond-shaped plates that are separated by deep cracks.
“She came to this world in a thick and hard crust, like a turtle,” her mother Natalia said.
She was born six weeks premature and had to be rushed to intensive care, where she spent five weeks, because her breathing became constricted because of the tight skin that wrapped so tautly that it even deformed her.
Now, Elizabeth’s care includes putting in eyedrops and gels every hour – as she is not able to close her eyes, bandaging her body, two long baths per day with a lot of exfoliation to shed the extra dead skin, and moisturising with cream at least six times a day.
She is not able to close her eyes because she lost her eyelids when she was in hospital. The poor child also lost two fingers and four toes.
Natalia said that because Elizabeth has most of her digits, it is “important she will be able to use her remaining fingers properly".
She added: “But 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.”
Elizabeth also lost the ability to regulate her body temperature as she is unable to sweat.
Her mum said: “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.”
Different doctors offer different prognosis for the child.
One said she might live until she is 20 while another told the parents that there's no reason Natalia can't live to old age, but they aren't thinking of that.
“Her diagnosis doesn’t affect her mental abilities fortunately and some say that children with the condition tend to be very intelligent," Natalia said.
“We love to watch how she is loved and adored by her three older siblings. They reminded us of how much love is in us humans.”
Comments
Post a Comment