"The first thing I did was to pack medicines". Story of a mother of a child with disabilities about evacuation and life in the EU
Krystyna Markin from Lviv is a mother of a child with a rare genetic disease Ring14 expressed in developmental delay and epilepsy.
However, Krystyna did not give up and continued to fight for the health of her son Lubomyr. She told "Socportal" about the search for specialists in Ukraine, evacuation because of the war, and Poland's experience treating and rehabilitating children with similar diseases.
"Socportal": Please tell us a little about yourself. What did you do before the birth of your child? How did you plan motherhood?
I am an artist by education; I have been working with ceramics for a long time, but, in principle, I am engaged in any decor; I love to decorate the house, clothes, and jewelry, now I am modeling shoppers, something creative fascinates me very much. Since childhood, I have dreamed of having four children; it was my sincere desire, which I remember very clearly.
We prepared for the pregnancy consciously, we quit smoking with my husband, and I took various minerals and herbal teas; we planned our pregnancies, the first and the second, taking care that everything would turn out well because we had an experience of miscarriage and had a hard time with it. But thank God, further pregnancies only made us happy.
Ostap was born. First, it was an incredible miracle, happiness that had no limits, with whom I wanted to spend all my time, although he did not sleep at night, and I was like a ghost. This did not change my motherhood at all, and when he started sleeping at night in the second year of Ostap's life, my husband and I decided that we could think about the double happiness on his legs.
"Soсportal": Did you find out during pregnancy that the child had health problems? What did the doctors say? How did you take this information and make different decisions?
During the second pregnancy, as during the first, there was a threat in the first month; I spent more time at home with Ostap and rested.
My doctor was meticulous about the pregnancy: all the tests, genetics, and ultrasound. And on the 5th month, the fetus began to lag in size. Every month this gap was growing; in the 7th month, they decided to inject me with dexamethasone in case of premature birth, and I was admitted to the hospital. And after spending the night in a ward with nine people, some of whom were giving birth; some were moaning; some were telling horror stories about childbirth, I got something I was not ready for mentally. The ultrasound showed a disappointing situation in the morning, and an emergency cesarean section was performed. From that day on, our survival began.
"Soсportal": How did you continue to rehabilitate the child? What did the state medicine and education system offer? What other options were you looking for?
Lubik was born at 34 weeks of pregnancy with low body weight for such a period and was immediately admitted to intensive care. He stayed there for four weeks. I heard that he would not survive, that he had hypoxia, and all other horrors on the first day I visited the doctor. However, I did not believe a single word and was sure he would be fine; he just needed time and his mother. So every three hours, I went to him to feed him. And when he gained 2 kg, we took him home. At home, he immediately gained weight, but hypotonic muscles did not allow him to develop physically.
I found a very qualified intensivist who did a miracle with him. After rehabilitation, Lubik, who had not held his head before, began to crawl, sit, walk, and hold on to support. It was a miracle for us.
At that time, he was diagnosed with hypoxia, ischemic damage to the nervous system. And neurologists treated, according to this diagnosis, stimulated the brain after a stroke. I will never know what exactly provoked epilepsy, but it started. And it started like a new thunder with all its consequences, breaking my emotional and physical state and Lyubik.
But I am a fighter; this is just a new stage of my war for his life and health. We began to go through different options and found a way to Italy for diagnosis and consultation with neurologists about the origin of epilepsy.
When we arrived in Italy to take tests, Lyubchik's condition began to deteriorate, epilepsy returned, and with it - pain, fear, and uncertainty. And then we got the result - on the one hand - a shock - because it turned out to be genetics. And on the other hand - everything fell into place. Everything that happened to him these five years was like a book. The disease is called genetic spontaneous mutation Ring 14.
When the shock passed, it became easier. I realized that the guilt I felt all these years, searching, remembering what could have caused this disaster, was groundless. Although, of course, I heard from doctors that it was our fault.
It became easier. There was an understanding that we are not alone; we have instructions on how to act. But at that time, Lubik's seizures returned, and we decided to entrust the treatment of epilepsy to specialists from Italy, who diagnosed him and had a patient with the same mutation. But it was a mistake because he stopped walking, sitting, and holding his head after the prescribed treatment. This was probably the worst thing; we decided to take off these medications and returned to therapy to restore the gait.
Fortunately, we found a doctor in Odesa, who took on our complex case, and we went into remission after long attempts. And my son was able to attend kindergarten.
"Soсportal": Where did the war find you? How did you evacuate?
There were rumors that there would be a war for a long time. And after the Covid shortage of medicines, I stocked up for a year. I remember well that I saw a picture before me of how we would run away. Therefore, I repacked all the medicines in a large box daily, from blisters to vitamin jars, to take up less space.
And then, on February 24, the sirens. The first thing I did was finish packing the remaining medicines. Knowing historically what the Russian army is capable of, I could not stay in Ukraine. Emotionally, it was terrifying; terrifyingly, I realized that I could not lose so many years invested in Lyubik because they would have seizures again because of the sirens and noise to go to Budapest for a week (haha) with the children. It turned out that it was not easier there, but morally harder; there was no husband nearby, no support, crying and fear all day. Lubik started having cramps again, which affected my emotional state. And now the war in the country, the war with Lubik's convulsions, we are in the hospital again. Then we decided that my husband should be with us.
"Soсportal": How is your life with your child now in the city of your stay?
At the moment currently and do not plan to return until the war is over. Lubik goes to an inclusive kindergarten, where he has his own program, t personally for him. This is ultimately an entirely reach to such children than we have in Ukraine.
"Soсportal": What of the experience gained in the EU would you like to adopt?
I always knew that the welfare of the country's interest is through the attitude towards people with disabilities, and in Poland it is at a v, a very decent level. I would like to see Ukraine schools for such children 25 (and we do not have any). Work for such children after school, in which there is an opportunity to improve the best qualities. And then you work all your life in the field where you were the best specialist; it's fantastic.
I had a dream - to gather all the specialists who helped us a lot in Ukraine, in some separate rehabilitation center. So that parents do not have to look for doctors in different institutions, but have the opportunity to go to all in one or the possibility of a consultation on the child's condition.
In Ukraine, we were looking for everything that helped Lubik on our own. And it took a lot of time, which such children simply do not.
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