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Let's play a game and see, how it feels. Victoria's life with cystic fibrosis

December 16, 2014, 11:50 3402 Author: Olga Vovk, translated by Yevheniya Devyatkova www.deti.zp.ua Close your eyes for a minute... Close your mouth and nose with your hands, hold your breath, like you are playing that childhood game of “whoever holds his breath the longest”

Close your eyes for a minute... Close your mouth and nose with your hands, hold your breath, like you are playing that childhood game of “whoever holds his breath the longest”. And when you can't hold your breath anymore, start inhaling, little by little, a tiny bit of air at a time. If this isn't working, try another game: draw a deep breath, plunge under water and stay there. And when your head starts spinning and your instinct for self-preservation takes over, come up and take a tiny little breath...

Yeah, you probably won't be able to inhale little by little, like I wasn't... For us these were just childhood games, though they weren't so complicated and agonizing, it was our choice, whether to play them or not. But for Victoria this is not a game, it's her life, 24 hours a day, 365 days a year. She has to live with it. And in order to make the painful breathing process easier, Victoria needs to take “Pulmozyme”. Our little girl's lungs are almost destroyed by the illness, so most of the time she has to breath with the help of the oxygen concentrator.

One can hardly envy Victoria's daily routine. She wakes up, turns out her oxygen concentrator and goes to the bathroom to wash up. After that — inhalations with Pulmozyme and antibiotics, and later — measuring oxygen in her blood, and after that — consumptive cough for about half an hour, because the inhalations help sputum discharge. And then, if she feels well enough, Victoria goes to school (on her way she has to breath with the help of the oxygen concentrator most of the time). At school she also endures cough and difficulty in breathing, just like we experienced when we were playing. And her evening ends with the same procedures that her morning began with. There is only one trouble — if Victoria doesn't have Pulmozyme, she won't go to school for sure; and if she doesn't do her inhalations for about a week or two, her lungs won't work, ever.

Victoria's dad cannot afford to buy such vital luxury, Pulmozyme for inhalations costs about $637 (10 000 hryvnyas) per month (one pack costs $130 and she needs 4 and a half packs a month). Concomitant medications, vitamins and antibiotics cost about $181 per month.

Until now our foundation used to provide Victoria with Pulmozyme for her treatment, but unfortunately at present we can't do that. Until now our fellow volunteers from Moscow used to be literally our lifesavers, the sent us the medications. But right now they can no longer do so because of the political tension between our countries and troubles at the customs office.

Victoria does not sit idly at home at the time when we, the concerned adults, are fighting for her every day. She is in a hurry to live her life, knowing that she is less fortunate than other kids. She goes to school, attends drawing, singing and jewelry-making classes. She participates in different contests, wins prizes, and, by selling her crafts in the hospital, contributes to the paying of her treatment. Before performing on stage, she breathes through her portable oxygen concentrator behind the curtains.

You can see our girl standing with her arms spread wide on many photos, as if she is making a deep breath, it's subconscious. Victoria herself says it's her way of showing how much she loves life and everything around her! She is very eager to live. And she hopes for your help!

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