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Daniil Pilyavsky, born in 2018 - Cystic fibrosis

December 28, 2018, 22:00 171 Author: Olga Vovk “Hello adults, I'm Danka! I am only 10 months old, the people around me believe that I am the toughest and strongest guy in the world, and also that I was very unlucky in life, and I will always be sick."

Daniil Pilyavsky, born in 29.01.2018

Diagnosis: Cystic fibrosis (cystic fibrosis), severe.

Excerpt: page 1, page 2, page 3, page 4

Conclusion of the geneticist

Discharge epicrisis: page 1, page 2

How to help?

Donation report

“Hello adults, I'm Danka! I am only 10 months old, but the people around me believe that I am the toughest and strongest guy in the world, and also that I am very unlucky in life, and I will always be sick. Perhaps they are somewhat right, I don't know yet .. But personally, I'm happy. I have a mom and dad, they love me and always try to make it easier for me. I have a sister who enjoys playing and painting with me. There are grandmothers and grandfathers who read books; of course I don't understand them yet, but it's so funny! "

Danechka could not write something like that, but his behavior and daily smile, despite the pain, speak for themselves! The baby has cystic fibrosis. For the first time, he visited the walls of his home when he was already half a year old. All this time, from his first birthday, he was in intensive care and in a hospital ward. Danya was born with intestinal obstruction, on the second day he was operated on, part of his small intestine was removed and his stoma removed. This was followed by 4 more operations, the doctors tried to improve the digestive system, but failed. In total, 22 centimeters of the small intestine were removed from the baby. There, in the hospital, the doctors speculated that Daniel was sick with cystic fibrosis.

Mom writes to us about how an incurable diagnosis appeared in their lives: “Doctors from Dnipro sent us to Krivoy Rog, where we passed DNA tests. Unfortunately, they were right, the diagnosis was confirmed. While the baby was in intensive care, I got a disability. The doctors gave us the drug Creon and a huge list of medicines necessary for life. As it turned out, we have to constantly buy everything else ourselves. Ursofalk, Berodual for inhalation, Okistar, ACC, special. vitamins and specials food, colostomy bags.

Recently we got to the hospital again, we were dripping with antibiotics for 3 weeks, and our ostomy was never closed. We are still suffering with colostomy bags, it is very difficult for me and my husband, and for the baby. Danya is constantly trying to tear them off, the place of their attachment is often inflamed.

On our shoulders lies a very expensive treatment for my son. We ourselves, alas, cannot cope. The intensive care unit and the hospital have completely "eaten" all the funds. The village council does not help, although the outpatient clinic argued that the head of the village council should allocate money to us for medicines.

Good people, I very much ask you to help us with the purchase of food, colostomy bags and medicines for my little son! "

Daniel has already lived in the hospital for more than 7 months, at home - only 3. Parents try to protect him as much as possible, but, alas, it does not always work out. Despite the harsh reality, he is very positive, active and inquisitive. The kid hardly sits in the stroller, turns around all the time and tries to run somewhere. Likes to watch cars, birds and adults running on important matters. At home he loves to run in a walker, examining all corners and all lockers. Dani has an older sister, whom he has been expecting from school. When she comes, she happily greets her with a ringing laugh and a smile. With his sister, he really loves to draw and read books. He also likes to play with soft musical toys, although he gets bored very quickly. From them, he quickly switches to cartoons, then to domestic cats.

Daniel is at the very beginning of his life. Now he needs support more than ever. His future is in our hands.

The family lives in the city of Apostolovo, Dnepropetrovsk region.

For more information, you can also contact the staff Of the Happy Child Foundation




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