A mum is speaking out to raise awareness of rare skin condition Harlequin ichthyosis, after her son was made fun of for looking ‘like a doll’.
Two-year-old Michal Winter was born with the illness, which causes his skin to shed every day and become red, cracked and dry and leaves him at severe risk of inection.
Mum Anna Ciesielska, 30, has to apply soothing lotion on Michal’s skin every four hours and says her baby is half the size he should be as a result of her condition.
She claims that people mock Michal’s appearance online and that people accuse her of pushing a doll – not a real child – in her pram.
Anna, from Derby, 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 found out that Michal had Harlequin ichthyosis when he was born covered in plates of thick, cracked skin.
Harlequin ichthyosis is a genetic disorder that causes the body to become covered in thick plates 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.
Anna didn’t see Michal until a few hours after his birth. When she was told what was wrong, she was incredibly concerned about her son’s wellbeing.
She said: ‘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.
‘At first it was horrendous for us. I was devastated.
‘The doctors didn’t know how long Michal would have.
‘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.
‘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.’
Michal’s skin condition means he requires a lot of extra care.
Anna applies two different types of cream to Michal’s skin every four hours to ensure his skin is constantly protected and kept free of infection. The child also has to have a special moisturising bath once a day.
The condition means that Michal is unable to regulate his own body temperature, so Anna has to make sure rooms aren’t too hot or cold.
The mum also has to limit the amount of time Michal spends outside as he is very sensitive to sunlight.
‘It’s a big challenge,’ says Emma. ‘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 is raising money to buy him a nanobubble bath to help to painlessly exfoliate his skin. If you’d like to donate you can do so through GoFundMe.
Do you live with a condition that people don’t understand? Get in touch to share your story by emailing [email protected]
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