Hüliya Ibryam: My daughter is a butterfly child - even when walking she gets sores on her skin

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Hüliya Ibryam: My daughter is a butterfly child - even when walking she gets sores on her skin
Hüliya Ibryam: My daughter is a butterfly child - even when walking she gets sores on her skin
Anonim

Hülia Ibryam is only 27 years old, mother of two children, one of whom was born less than 2 years ago with the rare disease epidermolysis bullosa. The young family lives in Tkach village, Kaolinovo municipality. Fortunately, the second child, born in September of this year, is perfectly he althy, although his parents did not know this beforehand. Genetic tests for the presence of the disease during pregnancy are only done abroad and are very expensive - Julia and her husband could not afford them.

The last week of October is set aside to raise awareness about this disease. On November 3, in hall 1 of the Festival and Congress Center-Varna, there will be a dance performance in support of the butterfly children - "We can all fly". In epidermolysis bullosa, the skin is very easily wounded - even a touch can cause wounds. Babies are born with such injuries on the skin, blisters even appear on the mouth, tongue, mucous membrane of the esophagus. All this often leads to severe infections, sepsis and often death for the newborn.

Mrs. Ibryam, when was your daughter who has epidermolysis bullosa born?

- Elif was born less than 2 years ago - in February next year she will make them. She is our first child, awaited, loved. We monitored the pregnancy on ultrasound, but everything was normal. When she was born and they showed her to me, I thought that everything would pass - she had sores on her arms and legs. Then more sores, blisters filled with fluid, began to appear. The first 1-2 days while we were in the hospital in Shumen, they didn't know what it was. Sores also appeared on her lips, I couldn't breastfeed her. The doctors from Shumen directed us to the Pleven hospital - we were there on the 6th day after the birth. We lay there for 3 weeks. They taught me how to do the bandages, how to take care of her, but the shock is very big. What shocked me the most is that the disease is incurable - she is my child, I want her to be well, I am doing everything possible. We have also had a baby boy for a month and a half, who is fortunately he althy.

Now how is Elif?

Now

there are mostly blisters on the legs and arms

I treat them with antibacterial creams, we apply non-stick bandages every day. She already wants to walk, but blisters form under her feet, the skin is injured. Everything wants to touch, it's more difficult now, I try to keep her. A wound is obtained even from pulling the toy, from touching something. She cries a lot with the bandages, it hurts, my heart is breaking, but there is no way…

For now the biggest problem is feeding, she only weighs 6 kg. He doesn't want to eat because he has sores on his tongue. They pass, then blisters again, it hurts when she swallows. He gets sick easily, we are often in hospitals - he suffers from viral infections, it's all because of weak immunity. Such a child is brought up with great pains, but Elif is everything to me, I will take care of her, I will not leave her. I am very worried about her, I hope there will be some kind of treatment for this disease as soon as possible.

Weren't you worried about having a second child?

- Yes, we were worried. My husband all over

didn't agree to have a second child

But I decided it for her sake, I didn't want her to be just a child. We hoped our second child would be he althy. We have not done any research beforehand because it is very expensive and is done in Germany and other places abroad. I really wanted to have another child, after us her brother will take care of her. She will need help. But I had decided that even if the second child had been born sick, I would still take care of him, he is mine - I will not leave him.

You don't have any other sick people in the family right?

- No, we haven't, we hadn't even heard of this disease. How it came about, where it came from - we don't know. In Shumen, doctors do not know about this disease, they have no experience with such patients. They have more experience in Varna, the last time we slept with Elif in "St. Marina", I'm happy there.

I have not despaired, we will manage somehow.

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