Book of consolations
WRONG DIAGNOSIS . Ostap Panych urgently needs surgery to install a cochlear implant. Three-year-old Ostap Panych was treated for autism for more than a year. The child did not react to the speech addressed to him, at first he spoke a little, and then lost his speech skills. Observing the child, the parents suggested that the cause of the regression may not be autism, but deafness, they turned to specialists who diagnosed a new diagnosis: Ostap was indeed diagnosed with bilateral sensorineural hearing loss. As soon as possible, the child needs to have a cochlear implant installed, which will restore his ability to hear and allow him to learn to speak again. Ufond journalist Nina Filatova tells the story of Ostap Panych to popular singer and songwriter Arsen Mirzoyan. - Arsen, our little hero, apparently heard from birth, but then gradually lost his hearing. But you yourself do not hide that you had a hearing problem? Please share your story. - Yes, I have both ears prosthetics, but I’ve already forgotten about it. Most likely, I had hearing problems since childhood, but no one paid attention to them. Maybe there were some tests at school, but what a diagnosis there could be in Soviet schools! At first, the problem was with one ear, and I felt uncomfortable talking on the phone. But I didn’t pay attention to it myself: you’d think I couldn’t hear the phone with one ear, I thought it was something wrong with the phone.
"And how long have you been unaware of your illness?" - I haven’t started getting a job yet, somewhere in 2000. This was after the institute, I came to work at the Motorsich company with a high level of noise, and there was a quality medical examination, checked the tonal audiometry of each ear, diagnosed with "otosclerosis". It is said that it is unknown how long it lasts and surgery is needed, because if the ear bones do not work, it can lead to atrophy of the auditory nerve. The operation was not postponed, but Gusakov Alexander Dmitrievich, a professor, immediately told me: "See you", because the diagnosis was that if one ear is deaf, the other will be deaf. He warned that this was happening fairly quickly. The professor was right, and in 2004 I had surgery on my right ear.
- Do the operations guarantee you that you will continue to hear well? - I do not know. Some Lori say that dentures wear out, other Lori say that not only dentures wear out, but also healthy bones (laughs), and it is not known which is faster.
- Were you worried about hearing loss? - I listened to the forecasts of doctors, not very favorable… They reasoned as if I was going to live forever. But I also came across realists who argued that, in principle, there is nothing wrong with that, even if you become deaf in old age (laughs).
- Were you worried that your daughter may have hearing problems? - I have three children, two eldest sons and a young daughter. All children hear well, there is no reason to worry, although the disease is insufficiently studied, and no one knows why it occurs and how to prevent it.
- The parents of our little hero Ostap Panych are worried that they lost a lot of time and treated the child for autism in vain, they even agreed to stimulate the child’s brain, and everything was in vain ... - My eldest son was also diagnosed with autism, a mild form, but I never thought of trying any stimulant procedures. I think that society itself will begin to influence it in adulthood. The son goes to a regular school, swims, maybe he is not very sociable, but he is in correspondence with friends, he can answer someone sharply, I think: "Well done!". It seems to me that people who are a little closed-minded have more perseverance, which I lacked so much. Why is it bad? We do not have Soviet times in the yard, when there was a period of equalization and collectivization. In the yard of the 21st century, and we still do not know the names of professions that will be mastered by our children. And we don’t even know what to cook them for. We can only give them a foundation, and specifically a craft - it will be their choice. So my mother didn’t know I was going to be a singer,
- Did you operate in Kiev yourself? - In Zaporozhye. And I recommended that other people who had hearing problems turn to the professor he was treating. He uses advanced techniques, performs operations through the ear hole, replaces bones with a microscope, without the ancient Soviet method of intervention, when the ear is cut, then the operation is performed and sewn back, it happens - and not quite exactly. There are few specialists of this level in Ukraine, I know two, but perhaps they have already begun to educate.
- And now loud noise affects your auditory perception? - Where it is very noisy, I try not to be.
- Given the fact that you give concerts, it’s probably not easy to be away from loud noises… Do you teach your children to sing? - I did not teach and do not teach children to sing. I don’t even remember singing. We sang only in the pioneer camp what we were forced to do. Nobody liked to sing with us, and I had two in singing. In my opinion, this trend of numerous talent shows pushes parents to put the child on stage, and the children then grow up narcissistic.
- And how did it happen then that you connected your life with music? - It happened in the first year of the institute. Zaporozhye became the main festival capital of the country in the 90s, and many music teams began to appear in the city. The local jazz club brought world-class stars, for the first time in the post-Soviet space stars of the level - Jacques De Janet, performed in small industrial DCs, and people from all over came to listen to them, even from Moscow. The festivals were a parade of non-formats, they were performances by people who play non-format music, but quality. Then came "Ocean of Elsa", "Second River". "Tartak", "Dance on the Congo Square". And at that time I was just trying to pick up a guitar. Now I have formed my view on music: I want intellectual music, and that the song had a character. The song and the person must be as one whole work.
- Arsen, thank you for agreeing to give an interview to Ufond and, judging by your Facebook page, you also cooperate with the charity Internet project "Country of Good Deeds"? - I am a fundraiser of the Zaporuka Foundation, but sometimes I make reposts of other foundations when I know that it is really possible to help save a child. We once raised money for a girl who needed a liver transplant in Belgium. And I was firmly convinced that if you raise money and operate on the child, he will definitely be saved. It seems to me that volunteers in our country raise so much money that they can build their own clinics, raise specialists and conduct operations here. However, we live in a corrupt society and, alas, this also applies to medicine. Medical officials say there is a war in the country, that there is a growing risk that "black transplant specialists" will work, and that there will be illegal organ trafficking. And the law banning organ transplants from non-native donors harms many patients. During the 25 years of Ukraine’s independence, the Ministry of Health had to develop a new health care system. Especially since Chernobyl already existed in the country, and it was clear that its consequences would be felt. Although this does not apply to all areas of medicine. Ophthalmology works well, neurosurgeons, military medicine. But we need to create conditions for our children to be operated on here.
- We have many charitable foundations in the country. How to understand which of them is worth trusting? - We have foundations that make charity fashionable. There are foundations that work with the Charity Exchange, an international organization that has developed a certain transparent payment scheme and publishes reports on fundraising and assistance. The cooperation of foundations with the Charity Exchange is probably an indication that the foundations can be trusted.
But I think that there is a critical situation in the health sector now, and we need to gather for a congress of charitable foundations - leaders, doctors, volunteers, discuss issues and jointly present their demands to the Ministry of Health to reform the system and effectively treat our children. , and adults in Ukraine, not abroad.
- Arsen, will you share this interview and Ostap’s story on your Facebook page? In this way you will help more people to learn the story of Ostap and help him. - Yes, I will. - What would you like to wish the child’s parents, because while they have a very difficult period, they are anxiously awaiting treatment…
- I can tell them one thing: let them believe and do what needs to be done to the maximum. I think that then all the problems will be solved.
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