A UK baby has been brutally mocked over a rare disease that causes his skin to crack and shed, but his courageous mother is pushing back against bullies.
Two-year-old Michal Winter was born with Harlequin ichthyosis, a severe genetic disorder that left him with thick plates of skin that crack and slough off. His mother, Anna Ciesielska, 30, posted graphic photos online that depict how the disease even turned bedridden Michal’s lips and eyelids inside out.
As a result, she has to apply moisturizer every four hours to slow his rapid shedding process. The disease has also prevented Michal from walking and has stunted his growth — leaving him half the size of a child that age.
Unfortunately, Michal’s excruciating condition hasn’t stopped gawkers on the street from poking fun. “I was in a shop and someone came up to us and was staring at Michal and asked if he was a doll,” Ciesielska says, adding that when Michal started moving, “they were surprised he was a real boy.”
The taunting has extended to social media, where internet trolls cruelly mock his appearance, says the heartbroken mother. “A doll baby,” jabbed one Facebook tormentor.
Despite the online attacks, Ciesielska maintains that “Michal is a perfectly normal boy with a wonderful nature. He just has this skin condition.”
Many Facebook fans echoed her sentiment, saying, “I THINK YOUR SON IS BEAUTIFUL!” and “You have a beautiful little boy lots of love from Australia.”
Still, it’s been a long road for the mother, who didn’t know Michal had Harlequin ichthyosis until he was born. “When I first saw him, I was obviously very upset,” says Ciesielska, who was worried that her baby “would suffer and was in pain.”
It didn’t help that doctors initially didn’t know what ailed Michal, either — or how long he had to live. They were eventually able to diagnose Michal with the genetic disorder.
While not fatal, Michal’s illness requires his mom to impose a strict regimen to prevent his skin from cracking or becoming dangerously infected. Along with the aforementioned skin lotion, Ciesielska gives him a daily moisturizer bath, limits his time in the sun and even monitors the room’s temperature because his body is unable to regulate its own temp.
“He’s always at risk of infection and getting sick,” says Ciesielska. “We have to be very careful all of the time.”
Fortunately, “we’ve had so much help and support from people,” says the grateful mother.
As a result, Ciesielska is currently raising money to purchase a “nanobubble bath” to help remove his skin painlessly.
“He’s such a happy and smiley child,” says Michal’s proud mom. “He’s overcome so much and despite the challenges he faces, he’s such a happy and loving child.”
In New York’s Ulster County, a couple and their 2-year-old child have faced harassment because their baby also has the same rare condition. In October, Jennie Riley shared their story with The Post about caring for daughter, Anna, as well as facing abuse.
“We can hide Anna away, or we can celebrate her,” she said. “We get stares and questions, but we felt the need to go public.”
Last month, a Long Island woman was arrested for harassing and threatening little Anna on Facebook, Instagram, GoFundMe and in letters sent to her home over the course of a year. Krista Sewell, 26, was charged with felony aggravated harassment as a hate crime.
"Skin" - Google News
December 10, 2019 at 10:50PM
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Toddler taunted over painful disease that causes skin to crack - New York Post
"Skin" - Google News
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