Mom Anna Ciesielska was shocked and heartbroken when her baby boy, Michal Winter, was born with a rare and painful skin disorder that causes his skin to become severely dry, tight, and scaly all over his body. Yet despite this, the 30-year-old mom says that her now-2-year-old is all smiles—and consistently cheerful, despite his condition.
Michal has a skin disorder called harlequin ichthyosis, which causes his skin to constantly harden and crack. He was born covered in dry painful scales that pulled his mouth open—a symptom that also inhibits nursing. He also lacked the protective barrier that healthy skin is able to serve as against infection.
“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,” Ciesielska told Caters News. “I was worried that he would suffer and was in pain.”
Babies born with harlequin ichthyosis used to have an extremely low survival rate past the first few days of their life, and doctors initially believed that Michal wouldn’t survive for more than a few weeks. However, the tiny warrior defied all of the odds, and now he lives a vibrant and happy life with his mother—albeit with a few modifications.
Ciesielska has to use ointments to hydrate Michal’s skin every four hours in order to prevent it from cracking, and she has to help regulate his body temperature and keep him out of the sunlight. This means that Michal rarely ventures outside, something that might seem surprising for an energetic 2-year-old. Yet even with all of the adversity he faces, the toddler never seems to shed his sunny disposition.
“Michal is a perfectly normal boy with a wonderful nature, he just has this skin condition,” said Ciesielska. “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.”
His condition means that people sometimes rudely stop and stare when the pair are out in public, sometimes even going as far as to discourteously inquire after Michal and what’s wrong with him. Ciesielska admitted that people have mistaken her son for a plastic doll, looking alarmed when he moves and alerts them to the fact that he’s a real boy.
“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.”
Still, the small tot seems to love going out and about and getting to meet new people. And eventually, Ciesielska and Michal’s father, Sebastian, hope to raise enough money to buy Michal a hydrotherapy bath that could eventually help him manage his own skincare routine and start to take care of himself.
That simple amenity would making a big difference allowing Michal “the independency of looking after his own skin as he gets older,” Ciesielska said.