A mother has told of the heartbreak of bringing up her one-year-old daughter with a rare skin condition that means every gentle touch can cause agony.
Little Lilijana was born with the genetic disorder epidermolysis bullosa – or EB – which makes her skin so fragile it can blister at the slightest touch.
It is commonly known as butterfly skin, after the delicacy of butterfly wings.
Lilijana – from the municipality of Bildstein, Vorarlberg State, Austria – was only six weeks old when she was diagnosed with the condition.
Her 34-year-old mother – named only as Melanie I in local media – explained: “On a good day, ten new blisters appear, on a bad day many more.
“Her body is covered with wounds, but we accepted that.
“Lilijana has a moderate form of the disease. Luckily her fingers will not be fused. We also have a chance that she will not end up in a wheelchair.”
Melanie and her 35-year-old husband Alexander recalled how they were shocked when they saw Lilijana had parts of her skin missing at birth.
She said: “We didn’t know what was going on. In the hospital, they were completely overwhelmed.
“Luckily they reacted quickly in the children’s intensive care unit and asked the EB house in Salzburg, an expertise center for ‘butterfly children’, for instructions.
“Nevertheless, Lilijana lost weight instead of gaining weight, and new wounds kept appearing.
“I was only allowed to hold my newborn after a week without a pillow in your arms.”
Melanie both of them were admitted in the EB house, and added: “There they answered every question we had, regardless of whether it was about medicine or fears about the future.”
She also revealed that learning how to deal with Lilijana’s condition over time was not easy as she always has to be monitored.
Melanie said: “When she pulls herself up on a piece of furniture, larger patches of skin can come off.
“Or she makes big blisters on her fingers by slamming a book and pinching her hand.”
Even warm weather can pose a threat to Lilijana.
Melanie explained: “When she sweats, her skin becomes swollen and she flakes off at the slightest touch.
“Of course it hurts extremely. I’ll be glad when the summer is over!”
Most parents take the rough and tumble of childhood play for granted but for Lilijana it is a huge risk.
Melanie said: “Every clumsy touch, every slightest friction can cause blisters.
“We are always faced with new challenges, even had to fight for the care allowance despite an 80 percent disability.”
But she said they would not have made it as far if it were not for Debra Austria, the care group organisation that helps families affected by the disorder.
Melanie said: “We are very grateful that Debra exists. They support us in purchasing products that are unfortunately not covered by health insurance, and they have enabled us to make valuable contacts with other affected people.
“Also numerous research projects are funded – this gives us hope that one day our daughter will be able to lead a fairly normal life.”
Reports claim that people with severe cases of the condition have a maximum life expectancy of just 30.
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Story By: Georgina Jedikovska, Sub-Editor: Marija Stojkoska, Agency: Central European News
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