Strangers mock my baby because of rare condition that causes his skin to shed every day
A MUM has lashed out at cruel strangers – who mock her baby boy because of a rare condition that causes his skin to shed every day.
Anna Ciesielska, 30, from Derby, says she has been bombarded by taunts online comparing two-year-old Michal Winter to a doll.
The youngster was born with Harlequin ichthyosis, which caused him to be born with plates of thick skin that crack and split apart.
Anna has to apply lotion to Michal, who is half the size he should be, every four hours to keep his skin moisturised.
She has decided to share pictures of her son while he was in hospital to show how his tight skin caused his eyelids and lips to turn inside out.
Anna said: “People will come up to me and ask what happened to him and if they can help.
“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.
“When we go out people stare at us, their jaws drop. Sometimes a person will see a photo of him online and message me saying he looks like a doll, it really upsets me.
“Michal is a perfectly normal boy with a wonderful nature. He just has this skin condition.”
Anna only knew that Michal had Harlequin ichthyosis after he was born covered in hard, scaly patches of skin.
The abnormal growth of the skin inhibits growth and movement meaning Michal is still unable to walk and is smaller compared to other children his age.
She said: “It was a total surprise that Michal has Harlequin ichthyosis, I didn’t know anything was wrong until he was born.
“It was a huge shock. I thought I was going to have a healthy baby. Not even the doctor’s at first knew what was wrong with him.
At first it was horrendous for us. I was devastated. The doctors didn’t know how long Michal would have
Anna Ciesielska
“At first it was horrendous for us. I was devastated.
“The doctors didn’t know how long Michal would have.
“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.
“He loves meeting people and being out in the world, he has a passion for life.”
Anna revealed that she only saw Michal a few hours after his birth and that at first, doctors were baffled what was wrong with her baby.
She said: “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. I was worried that he would suffer and was in pain.
“Eventually, one of the doctors broke the news to me about what had happened.”
What is harlequin ichthyosis?
- Ichthyosis is a condition that causes widespread and persistent thick, dry, “fish-scale” skin.
- There are at least 20 different types of ichthyosis. Some types are inherited at birth and other types are acquired during adulthood.
- There’s no cure for ichthyosis, but a daily skincare routine usually keeps the symptoms mild and manageable.
- Most people with ichthyosis have inherited a particular faulty gene from their parent. The signs and symptoms of inherited ichthyosis appear at birth or within the first year of life.
- The faulty gene affects the rate at which the skin regenerates – either the shedding of old skin cells is too slow, or the skin cells reproduce at a much faster rate than they can shed old skin. Either way, this causes a build-up of rough, scaly skin
- Ichthyosis vulgaris is the most common type of inherited ichthyosis, affecting 1 in 250-1,000 people.
- Harlequin ichthyosis is extremely rare, but the scaling is severe and requires intensive care at birth.
- There’s no cure for ichthyosis, but moisturising and exfoliating the skin daily can help prevent dryness, scaling and the build-up of skin cells.
- People with severe ichthyosis may need to spend several hours a day caring for their skin.
- People with mild ichthyosis have a normal lifespan. However, the most severe inherited types can be life threatening.
Source: NHS Choices
Anna now has to follow a strict routine to stop Michal’s skin from cracking or becoming dangerously infected.
She applies two different types of cream to Michal every four hours to ensure his skin is constantly protected and exfoliated and gives him a special moisturising bath once a day.
Michal’s condition means that he’s unable to regulate his own body temperature meaning that Anna has to make sure rooms aren’t too hot or cold for Michal in case his body temperature becomes inbalanced.
Anna also has to limit the amount of time Michal spends in the sun in case his skin gets burnt.
She said: “It’s a big challenge. You have to keep him at the right temperature all the time.
“We’ve had so much help and support from people and I’m so grateful.
“He suffers from pain especially when his skin gets dry because with every movement his skin will crack.
“I have to keep him away from direct sunlight because it can burn his skin, he also gets cold very easily.
“You have to keep him at the right departure because he can’t regulate his body temperature.
“He’s always at risk of infection and getting sick, We have to be very careful all of the time.”
Michal’s family are raising money to buy him a nanobubble bath to help exfoliate his skin painlessly.
You can donate on their page here.
