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“You are my air.” “Without you I cannot breathe!” “I cannot imagine life without you.” “We are now inseparable.” – these are not simply words, but phrases that describe the lives of people with cystic fibrosis.
Unfortunately, there comes a time when people cannot fully breathe on their own. Then comes along a very helpful and necessary piece of equipment, oxygen concentrator, which allows them to breathe once again.
As of today, we have eight people that must use the oxygen machines. Some of them only need it for 3-5 hours a day, whereas some other patients need it 24 hours a day. No matter their level of need, we must maintain the equipment and internal components – their lives depends on this. If we do not regularly change the filters, cannulas, and tubing the equipment becomes a breeding ground for infections. And if that happens the equipment actually harms the patient and becomes a dangerous pest.
Unfortunately due to the constant expenditures on medication, the patients do not always have enough money to properly maintain the equipment and instead postpone the costs on “the next pension.” It is easier and more economical to order the equipment from abroad. To order all the spare parts and supplies needed for maintenance will have a one-time replacement costs of 80-120 USD (excluding the cost of shipping). It is recommended that patients change the equipment every three months and if the patient is in a more serious condition, even more often.
In order for us to be able to get a bulk discount, we should order the equipment for all eight patients for the year. We need to reach 3200 USD to make this a reality.
I want to introduce you to each of our patients:
Margaritka Shkurenkova – “Margaritka is a very good child, she is always aware of those around her and worries about her loved ones getting sick. She worries so much about their health, that she even forgets about her own situation. Last time it was more than just a lack of oxygen – her mom had to help her breathe. We are so happy that caring people have helped us get oxygen, but we cannot even begin to imagine what would happen if, God willing, the machine breaks or is damaged. We dream that there will be happy and caring people on our Earth forever!”
Igor Bezuc (20 years old) – I graduated high school in 2015 and wanted to become a designer, but failed due to a lack of oxygen. I had numerous complications at the time. I like to draw and finished art school with a diploma. At the moment, I spend almost all of my time at home. Right now it is even hard to even to get to the fifth floor, without oxygen – it’s impossible.”
Milana Vasilenko (8 years old) – “Our daughter Milana is full of life! She is really active and therefore all of her activities have to do with active relaxation. She loves roller skating, riding a scooter and dreams about a bike. We love to spend outside in the fresh air. Milana loves arts and crafts and, like all little girls, loves dolls.
Lerochka Gerbonos (9 years old) – “Our Lerochka is a peaceful and loving girl. Our child is interested in the world around her – she learns with interest, based on new knowledge. Lera loves fairytales, she believes in kindness and magic, and yes even at the age of nine believes in miracles.
Lerochka loves needlework and is trying to learn something new. Our daughter loves beading and although it makes her really happy, she is limited by the fact that her eyesight has deteriorated. Lera has just masteres shambali – weaving colorful bracelets of different beads and colored strings, beadwork, soap making and ribbon making.
Due to the severity of Lera’s illness she has been homeschooled since third glass. She loves to study and is always happy to complete her assignments and classes with her teachers at our house.”
Andrey Datsyuk (20 years old) – I have been on oxygen for almost a year. Currents I am a freshman studying marketing. I like to spend my free time riding my bike or going to the pool, as well as helping my mother look at my younger sister Valera (3 years old). Unfortunately, I have little time for anything else as class, the oxygen and my treatments take up most of my time.”
Tatiana Zlobina (22 years old) – “I have been living on oxygen for 1.5 years now. Despite all the difficulties, insults, evil and betrayal I still believe in goodness in justice. Each day is a test and I try to overcome it with a smile. I’m not always successful, but the most important thing is to believe in oneself and have the support of close ones. After all there is a reason to live, eat and there is always strength somewhere to fight it.
The oxygen machine is very good and thanks to it I can go about my day and accomplish regular tasks and be less tired. What about right now? I practically depend on it 24 hours a day.”
Dmitry Katerinich (30 years old) – “I am already thirty years old and the doctors said that I have lived a long time. I’ve been living on oxygen now for a year and a half. My dream is to be healthy and that everyone with cystic fibrosis was healthy too!”
Ilya Soloshenko (13 years old) – “Ilya is happy, lively, active (when he is feeling well) and gentle. He is in the 6th grade and really likes math. He loves machines, cars and railroads. He also loves to wash cartoons and play on the computer. He loves riding the bike and smiles the whole time, and also likes to help me at home.”
Those are our patients and, as you have read, each of them is unique in their own special way, but united by the same illness. We ask you to help them. We ask for your help because we believe that treatments should be helpful and not harmful. Thank you that you are here with us in these difficult times and that you will help our patients!
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