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Viktoria Butenko, born in 2002 – cystic fibrosis

December 16, 2014, 11:10 6818 Author: Olga Vovk, translated by Anna Oliynyk www.deti.zp.ua Our dear Viktoria became an angel on July 23 2015...May her soul rest in peace!

Viktoria Butenko, born on 18 July 2002

Diagnosis: Cystic Fibrosis.

Up-to-date treatment news about Viktoria Butenko

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Telephone numbers of parents and volunteers

Our dear Viktoria became an angel on July 23 2015...May her soul rest in peace!

Vika’s mother, Alina, was proud to tell us about her daughter, her voice trembling. Their situation is rather typical for the beginning of life of a child diagnosed with “cystic fibrosis” at birth. But for every mother it is her own tragedy. From the very first days, the little girl had to fight hard for her life: after her birth, she had a surgery to remove part of her intestinal canal. Doctors assumed the girl had cystic fibrosis, which was finally confirmed only when Vika was 6 months old.

Over her 12 years, Vika more than once was hanging between life and death, when she was taken to the intensive care unit, her state being critical. But thanks to the joint efforts of doctors and her family members who believed in her she finally won those fights for her life.

The girl is apparently a leader, determined and goal-oriented. Besides, she is a creative personality. Despite all difficulties and having a lot of counter-indications, up to the second grade she went to an ordinary class of Khortitsa study and rehabilitation multipurpose center. But when her state became severe, she had to transfer to the individual study schedule. Now Vika attends classes only accompanied by her mother, three times a week.

Besides, she continues attending her art classes, and she is very good in drawing landscapes: Vika’s drawings are full of joy and sunlight. The girl values everything she has, she observes the smallest details of this rich and diverse world, makes her best to understand it and to enjoy every moment she has.

Due to the severe disease of her daughter, her mother Alina is not able to work, so her father Aleksandr has fully taken over the task of keeping the family. It is very difficult for him, as covering daily life-saving medications for Viktoria requires a lot of money. Besides, she needs special nutrition. The girl’s parents have to purchase many expensive medications with their own money: Kreon 25000, Ursofalk, Berodual, Enap, Avelox, Pulmozyme, polyvitamins, antifungal drugs, and antibiotics, all of which may not be covered with the salary of Vika’s father.

Vika’s daily routine is hardly to be envied: she wakes up connected to the oxygen concentration device, then turns the device off and goes through her hydrotherapeutic procedures; then it’s time for inhalations, at a time she may take up to 3-4 various medications, with Pulmozyme and antibiotic being a must; afterwards, the oxygen level in her blood is measured; and later on Vika has consumptive cough as the inhalations lead to expectoration, so the cough lasts for up to half an hour with no breaks; then, if she feels good enough, she goes to school. More and more often Vika breathes through the oxygen concentration device on her way to school. When at school, the girl still has her cough and difficulties breathing. Her day ends in the same way it begins. The only problem is that if, God save, Vika does not have her Pulmozyme inhalation one morning, she will definitely not be able to go to school, and if she will not have such inhalations for a week or two, her lungs will not be able to function at all.

Vika’s father is not able to pay for the vital medications for his daughter: only Pulmozyme inhalations for the girl cost about UAH 10,000 (606 US dollars) a month (1 pack costs UAH 2,150 (130 US dollars), and the girl needs 4.5 packs a month). UAH 3,000 (181 US dollars) more a month are required for the supporting medications, antibiotics, and vitamins.

Our foundation used to fully provide the girl with Pulmozyme, but unfortunately at the moment we do not have such a possibility. Our peer volunteers from Moscow used to save us (and we mean it), but now transfer of their aid is not possible due to the political situation between our countries and issues with customs control.

While we, adults who care, fight for every day of Vika’s life, the girl does not sit idle. She hurries to live her life. She knows she is not as lucky as other children. The little Vika manages to attend school, draw, sing and do handicrafts. The girl takes part in various competitions and takes leading places. She also contributes to covering the cost of her treatment, selling the beautiful things she does with her hands in the hospital. When she acts on scene, at the backstage she has to breathe through her portable oxygen concentration device.

If you look at her photos, you will see that on many of them she stands, spreading her arms wide, as if making a deep breath, it is her subconscious act. Vika herself says that in such a way she demonstrates her love to life and to everything around her! Vika wants to live so badly as she is in love with this hard grown-up life! And she desperately needs your help!

The family lives in the city of Zaporozhzhye.

The telephone of the girl’s father, Aleksandr: +3 8 050 452 48 64

If you have any questions, you may contact the staff of the Happy Child Foundation.

Happy Child foundation - effective help to the most needy children of the Zaporizhzhia region, Ukraine, since 2004

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