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This is an interview with Misha Bratushkin’s mother Anna. This family is facing two wars: cystic fibrosis and undeclared war in the Eastern regions of Ukraine. This family cannot handle this tough situation anymore and really needs your support.
Tell our readers about what your life in the grey zone is like, please.
So far so good but we are anxious. Misha has been still homeschooled. He is trying to study well but he quickly becomes tired due to chronic Pseudomonas infection…Our day consists of inhalations, physiotherapy, studies and walks. We try to spend more time outdoors. However we can’t go out when there are explosion sounds.
How has the war changed your life? What is currently happening on your side?
This situation has changed our family. We have started to cherish every moment we spend together and we love our city and country even deeper than ever before. This war has affected Misha, though. He is terribly afraid of staying at home alone and he sleeps with me in my room. We have been noticing frequent distinct sounds of baffles, especially at night recently. We have got used to such sounds… However, we are facing a new problem. Due to railway blockade between so called LNR and our territory there are no coal supplies to the Schastya thermoelectric plant. This means we can one day have no electrical power, which scares our family even more than attacks because my son cannot live without drugs and inhalations.
Have you experienced power failures? If you have, how long did it last? How has it affected Misha’s current health situation?
This year we had a few power failures during the day but we have overall experienced long absence of power for hours or even days since the ATO has started. The power failure makes it impossible to have inhalations, so Misha then keeps on coughing up phlegm all night long.
I am sorry for this uneasy question but I have to ask you this. People who are going to read your interview and support you might wonder why you are staying here?
Right, we are staying here. First, because we have our home here. Secondly, we have the right to receive some free drugs for Misha here. If we leave, we risk losing this option of free drugs and we would have to pay for our new accommodation. I have to look after my sick mother. Honestly speaking, we need a lot of money we do not have to move away.
Children with cystic fibrosis need many expensive medications. How much money do you need per month for your son’s treatment?
I regularly buy vitamins for my son without which his health deteriorates. I also buy hepatoprotection drugs due to complications caused by cystic fibrosis Misha is suffering from cirrhosis. My son needs an expensive antibiotic called Colomycin which costs us 12,000 UAH a month. In addition to the treatment of our children we need to buy special protein food, otherwise they lose weight which is pretty dangerous for them. The resource optimum food costs at least 300 UAH for a bottle and we need around 5-6 bottles a month. So, we need around 15,000 UAH a month to buy medications.
How can our readers support you?
We really need to buy a portable nebulizer called PARI BOY mobile S which runs on a battery so we can use it if we have power failures. This vital device costs 7,200 UAH and its generator to charge it costs 6,000 UAH.
How long does it last? How many times does Misha need inhalations?
Misha is inhaled twice a day – in the morning and in the evening and each procedure lasts around thirty minutes. This nebulizer can serve Misha for 24 hours.
I’d like to end our conversation with something positive. Tell us about your dream, please.
Our family dreams about peace on our beloved land of Donbass! And, of course, our biggest dream is there is a drug that can treat our son and make him healthy.
I’d love to leave a message for people who live in peace somewhere in the world. I wish you peace and never feel this dreadful war, which makes unprotected people – the elderly, and children suffer. Cherish whatever you have now!