From the moment he was born, Michal Winter has had the odds against him.
With an extremely rare genetic disorder, called harlequin ichthyosis, that renders his skin painfully thick and hardened, he experienced difficulties at birth that involved easily cracked plates forming on his skin that left behind a raw layer.
Now at 2 years old, Michal’s mother says he’s full of life, according to Caters News, and that the family has found a way to make the life manageable for the baby.
“Michal is a perfectly normal boy with a wonderful nature, he just has this skin condition,” the boy’s mom, Anna Ciesielska, 30, told the outlet.
She added: “Despite that, he’s such a happy and smiley child. He’s overcome so much, and despite the challenges he faces he’s such a happy and loving child.”
To regulate the negative side effects of his condition, Ciesielska applies several ointments to Michal’s skin every four hours in order to prevent cracking with the simplest of movements. Aside from the strict skincare routine, he also must be kept out of the sun, so as not to suffer burns.
“At first it was horrendous for us. I was devastated,” Ciesielska said. “The doctors didn’t know how long Michal would have.”
Doctors initially didn’t anticipate Michal living beyond the first few weeks, his susceptibility to infections worried the medical staffers who were perplexed by the uncommon disorder.
Newborns with harlequin ichthyosis have painful cracks in their thick, hardened skin, according U.S. National Library of Medicine. Diamond-shaped plates form on the skin, affecting movement and facial features, with the inhibited movement sometimes causing breathing difficulties.
The condition also means a loss to the protective barrier of the skin, meaning it becomes difficult to fend off infections and maintain a steady body temperature.
“I didn’t see him initially when he was born, only a few hours later. When I first saw him I was obviously very upset,” said Ciesielska. “I was worried that he would suffer and was in pain.”
She added: “It was a huge shock; I thought I was going to have a healthy baby. Not even the doctors at first knew what was wrong with him.”
Through their GoFundMe page, Ciesielska and the baby’s father, Sebastian Wisniewski, hope to raise money for more treatments and products that could help with his situation, including a specialized hydrotherapy bath that could one day allow Michal to care for himself.
“More importantly, [the hydrotherapy machine] will allow Michal the independency of looking after his own skin as he gets older and makes for a more enjoyable experience during his baths twice a day,” reads the description on the crowd-funding page, which has now raised about $4,000.
Since the disorder directly affects Michal’s physical appearance, Ciesielska said that she often fields ignorant comments about her son’s looks, both online and in-person.
“People will come up to me and ask what happened to him and if they can help,” she said. “I was in a shop and someone came up to us and was staring at Michal and asked if he was a doll. When Michal moved he was totally surprised, they were surprised he was a real boy.”
Despite the lack of understanding about his condition, Ciesielska says Michal is still as happy as can be.
“He loves meeting people and being out in the world,” his mom said. “He has a passion for life.”
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