2023-11-13 05:01:50
Kristina Psakhova is an incredibly beautiful and strong woman who fights every day for the health of her son. Marik is 9 years old and suffers from cystic fibrosis. This terrible genetic disease took the life of Anya Kartovenko almost a year ago. After meeting with Anya, we realized how important it is to talk regarding this disease and talk regarding the experiences of people who have encountered it. But in our conversation with Christina, we learned something more useful than the names of the funds and the treatment protocol – the right attitude in life.
“I was in denial”: Marik’s medical history
The son was born a strong and healthy boy with good weight. The only thing we noticed when we kissed the child was that the son was very “salty.” There were other symptoms that we did not recognize at the time: frequent bowel movements, vomiting out of the blue. But overall everything was fine.
When my son went to kindergarten at three years old, he began to get sick. He coughed all the time. We went to therapists for a long time, received treatment, and endured it. And then I went to a pulmonologist, who was surprised at how advanced the cough was. She immediately prescribed antibiotics for us and prescribed inhalations. We were diagnosed with hyperactive lungs and added to the risk group for asthma. My son felt better and stopped coughing. But just in case, they sent me to a geneticist, since my son had been ill for a long time.
Then I thought – what nonsense! After all, when a child is born, screening is done, including for cystic fibrosis. But already the first sweat test went off scale. The repeated test once more went off scale. We didn’t believe in the disease, because our son looked healthy, and the doctors had their doubts. A third test on new equipment gave the same results. We donated blood for DNA and began to wait.
I was in denial all this time and calmed myself down. What the hell is cystic fibrosis! At the first screening in the maternity hospital, it was not there (a Moscow geneticist later told me that this happens because infants need to be screened on the fourth day, and not on the second). We didn’t really know anything regarding the disease. But a genetic test showed the presence of the disease, and with strange mutations. Then I hid like an ostrich. Many parents lose their children in denial.
The disease has different manifestations and course. At first we were diagnosed with such terrible mutations, the most severe ones. I started visiting different famous doctors. They say: some strange mutations, this cannot be. As a result, we went to the Federal State Budgetary Institution “Research Institute of Obstetrics, Gynecology and Reproductology named following. D. O. Ott” take tests with the whole family. The geneticist there saw the mistake and called the clinic where the test was originally done. They confirmed that they were wrong with the mutations
I had a glimmer of hope: they made a mistake at the maternity hospital, they made a mistake at the clinic, – maybe there is no cystic fibrosis! But it turned out that Marik was the carrier of a unique genetic disorder: the second person in the world with one mutation and 19 people in the world with another mutation.
Adaptation following diagnosis and litigation with the Ministry of Health
We started treatment, I began to study everything regarding the disease. Marik was already five years old. Patients with cystic fibrosis are usually prescribed a hypertonic saline solution, which thins and draws out mucus. Ideally, this drug contains hylauronic acid. This drug is called Gyaneb. For a long time we did not receive this medicine for free, since it was not included in the list of Vital and Essential Drugs (vital and essential medications – approx.). At the same time, I knew that such a drug was given out in Moscow.
Then we were denied, for example, Gianeba and other medicines (saline solution, Creon, etc.). I had to contact the prosecutor’s office, where senior assistant prosecutor Konstantin Yuryevich Krasnikov took over our case. All the courts are with him. We are very grateful to him for the work he has done. The court sided with the disabled child, and they began to provide us with the necessary medications and inhalers. Although the trial lasted almost a year, since the Ministry of Health appealed the decision in all instances! Parents need to know that any disabled child has the right to receive life-saving medicine according to its trade name, and if you are not given such medicine, then feel free to go to the prosecutor’s office.
It still takes a lot of money to buy all the medications. We receive enough medicines from the Ministry of Health, but not all the drugs are original. During an exacerbation, of course, you buy original drugs with your own money. Now Marik has “pseudomonas aeruginosa” (a bacterium that destroys the lungs – approx.) nebulizers need to be changed (nozzles for inhalers – approx.) every month, we use three of them. One nebulizer costs 6 thousand. The Ministry of Health does not supply them in full. Financially it can be difficult, we sometimes stretch these nebulizers as much as possible.
Or an antibiotic for Pseudomonas aeruginosa costs 100 thousand per box, but you need to breathe for six months, that’s 600 thousand. The first month we paid for it ourselves, now the Ministry of Health pays it out. In general, every day, whether you like it or not, you go to the pharmacy.
We also weren’t given disability until we were 18, which was just ridiculous! Every year I collected documents and confirmed my disability, although the disease is genetic and nothing will change, because it only progresses. Here once more the prosecutor’s office helped. The prosecutor corrected the application to the ITU and Marik was given disability until he was 18 years old.
I don’t want to quarrel; it would be easier to resolve these issues peacefully. Many doctors helped me a lot and I am grateful to them. But there is no other way, you always have to defend your rights. When I was still in Moscow, the doctors told me the following: “You must understand that you will have to fight for your child.” In Moscow, they receive all the medications in the required amount, because mothers unite and organize pickets, so the children are provided with everything. In our country, unfortunately, many parents hide their child’s diagnosis; there is no active community of parents.
Basic rule for mothers with disabled children: If you want to receive something, write a statement. I went through this school and do everything through official papers. And then you will get what you need. Doctors are, of course, happy to help, but there is no well-functioning system, so every medicine and prescription has to be sought.
“We need to enjoy life”: family and the right attitude
I have a husband, Roma, and an eldest son, Vadim. My husband tries to help me in everything. He is a very kind and positive person, although his fate is difficult – in Petrozavodsk you cannot earn enough money to provide for a child with cystic fibrosis. He really wants to be with his family, but he has to work away from home, a month here and a month there. We really appreciate it. We miss him, of course. My husband is always positive. And he charges his son with positivity and jokes. When Marik cries during inhalations, I call Roma via video link and he sorts everything out. Although dad is far away, he is always near.
I have a very cool eldest son, which quickly became independent and my support. Vadim is a third year student at the Vyborg Aviation School. He has not lived with us for three years. He, of course, got it in childhood – he was nine years old when Marik appeared and I switched to the youngest child. I saw him as a grown man, although he was still a child himself. Vadik has enormous patience: he is not jealous, does not get annoyed that we pay a lot of attention to Mark. He helps, supports us and loves his younger brother very much. Understands why we treat Marik especially.
Marik and Vadim
I used to be terribly depressed all the time. I read news regarding sick children and cried all the time. I looked at my child and thought: “Why does my child have to die? How long does he have left?” It was scary. Against this background, Marik began to have panic attacks. He was going through the same things that I was going through.
Then I changed my point of view on the world: I decided to focus on the positive. I removed all negativity from my information field. If you see a car with loud music in the city, then don’t point your finger at your temple: I’m lifting my spirits. I realized that I need to enjoy life and then everything will be fine. And Marik feels it. Sometimes he will come up and say: “Thank you mom for everything you do for me. You love me, you help me with my medications”. I even compare photographs of these two periods and see how I have changed. Yes, and Marik had panic attacks. A joyful and happy mother means the child will be happy.
Targeted therapy for Marik
Previously, children with cystic fibrosis did not live past 18 years of age. because there was no proper treatment. The children now have good prognoses. Even in Russia, children began to live up to 30 years, and in Europe and the USA in general – to old age – thanks to targeted therapy, which is now prescribed at a very young age. In Russia, too, they have quietly begun to receive targeted therapy thanks to to the “Circle of Good” fund.
The annual Trikaft course costs 32 million rubles. Why are targeted therapy drugs so expensive? Mystery. Trikafta improves the functioning of the chlorine channel. You must take the medicine for the rest of your life. This does not cure the disease, but it significantly improves quality of life. In any case, you won’t be able to get rid of inhalations. But lung function and all indicators improve. Many people write that they feel much better already from the first pill.
Our situation with the target was more complicated, since Marik has an atypical mutation. We were offered to do a test for intestinal organoids. It turned out that despite rare mutations, all targeted drugs will work in our case. Last week we received a letter that we had been approved for the purchase of this proofreader, it will be available in February. We wait.
Marik is now 9 years old and plays wind instruments. He plays the flute and saxophone and goes to school. A child with an illness should not sit at home; if possible, he should live like other people. Children with cystic fibrosis are much more mature than their peers, even if it doesn’t seem so outwardly. He inhales himself, takes care of himself, washes his hands extra times, wears a mask, and always puts on a hat and scarf. He understands that any illness for him means unnecessary antibiotics. Marik wants to live!
I am sure that such children will bring a lot of benefit to our society if they are properly cared for. Of course, Marik is worried that he is sick, and that he always needs to inhale when other guys are walking and relaxing. And therefore, every year he makes a wish that all people would be healthy, then his illness would not exist. As a mother, I am sure: he will live until old age and live a happy life! After all, we do everything for this!
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