Translated material
"He is completely different"
"Jan" in Armenian-sweet, beloved, good. So called George in the family. There is a shunt in the baby’s head. The whole back is in scars from operations. The legs are weak, pale, lifeless, the feet are clubfoot. He cannot walk
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Victoria and Stepan Bagyan have two children - George will be two in May, Emilia was born in December last year. Children grow up in a large family - parents, grandmother, great -grandmother. There was still a grandfather, but on New Year's Eve, a 60-year-old man, a neighbor stabbed a nurse of the family. Almost 300 people gathered to bury him, before that everyone in the village loved him. This terrible grief has also increased to the severe disabilities of George, with difficulty a realized family. And with grief, and with disabilities you need to live.
The first after the grandson moved to Russia in the Bagian family was called George - in memory of his uncle. The 26-year-old man died in 2014. The gums, lymph nodes became inflamed, the temperature lasted for a long time: this is how acute leukemia showed himself. Relatives sold the house and everything that could be saved, but this did not help. “I didn’t have time to see anything,” his elderly mother says with pain in his voice. The elder brother of George, Stepan, named the first -born in honor of his brother, so that at least the name remains.
The first word of George was the word "Tati". In Armenian-grandmother. Tati cannot breathe on the grandson.
Great -grandmother watches how Stepan is engaged in her great -grandson photo: Andrey Lyubimov for TDThe Bagians arrived in the Kaliningrad region in 1992, when the war between Armenia and Azerbaijan began: it was necessary to save themselves and three children with the Earth’s conflict. Relatives lived in the cloudy-sustained Baltic. The family was given work, a roof over their heads.
Stepan worried the loss of his younger brother and did not want to create a family for a long time, but still married a 20-year-old Vick, beautiful, calm, reliable. As a well -chosen puzzle, she fit into the pattern of this family, accepted her rules - first give food to a man, abundantly feed the guests, not to argue to the elders. Perhaps only such daughter -in -law can get along in the same kitchen with mother -in -law. Women cleverly share all the duties of the house, care for children and an elderly great -grandmother. A 89-year-old woman in black speaks poorly in Russian, listens more, from time to time casting a glance at the photo of her murdered son, then at the great-grandson, whom fate was perfect before birth.
Why is this to her and her loved ones? Why? No one has answers.
If, during ultrasound examination, the fetus is diagnosed with Spina Bifida, pregnancy is usually recommended to be interrupted. Vika does not ask herself what she would do if she knew.
Gosha sleeps photo: Andrey Lyubimov for TDShe wore the first pregnancy without problems. Is it that toxicosis, but who does not have it? Neither tests nor screening showed any pathology. After the birth of George, a neurosurgeon said: "The boy has a hernia of five by five, how could you not see her?"
George was born with a huge bag on his back - that very hernia. During childbirth, the bag broke, exposing the nerve roots. Then it became clear that the boy had a disease with a difficult to pronounce name - Spina Bifida. This is a vice in the development of the spine, the vertebrae with it remain undeveloped. The reasons are still unknown.
Vika confidently says: “We do not regret that George was born. He is a great child, cheerful, smart. ” Grandma picks up: “So sweet, there are no words. We call him so - Jan. ”
"These are our children"
Spina Bifida is of varying degrees. Goshi has a heavy option. Often this diagnosis is accompanied by hydrocephalia, and the doctors told young parents that the child simply does not have a brain, it is better to abandon it. “Why do you, young, such a child? He will be a vegetable for life. Also give birth to a healthy one. "
But in Armenian families it is not customary to leave children. After the earthquake in 1988, during the year, relatives of the victims dismantled all orphans.
Mom collects with Gosha pyramid photo: Andrey Lyubimov for TD“These are our children, who will be better than us to watch them? - says the grandmother. - How many tears we spilled then, Stepa did not sleep for a week, Vika either. Well, what to do? We can’t change anything, that is, that is. ”
For his incomplete two years, Gosha suffered several operations and anesthesia. For example, after installing a shunt, meningitis began (shunting with hydrocephalus allows you to remove excess fluid from the skull). Doctors pulled out a shunt, put an external drainage, replaced a shunt with a new one. The first three months the boy and his mother spent in the hospital. There, Vika told about "I believe in a miracle."
Several times, Vika and his son had to fly to Moscow and St. Petersburg for examinations and operations. George has a whole set of concomitant pathologies - congenital deformation of the feet, cryptorchidism (inappropriation of testicles into the scrotum). The family could not buy tickets to Moscow and St. Petersburg; the same charity organization “Believe in the Miracle” helps with tickets.
Dad walks near the house with his son Gosha and his cousin Valeria photo: Andrey Lyubimov for TDIn Moscow, George changed the valve in Shunt, performed surgery on the spine. After that, the boy began to feel better, he even had a weak sensitivity in his hips. In St. Petersburg, George conducted an examination of Stop, but so far they decided to do nothing with clubfoot. In February, George and his mother again flew to the capital, where the boy was undergoing an operation related to cryptorchidism, and conducted another examination.
“I believe in a miracle” is the only organization in the Kaliningrad region that supports invisible children. They seem to do not exist for official medicine. But they are - slowly fading or quickly dying in cities and villages of the Russian Baltic states.
Dance, dance!
Previously, Gosha cried a lot, mainly from pain. The liquid in the head with hydrocephalus causes a lot of suffering. After the noise, George became much calmer. But, like many patients with Spina Bifida, he has problems with the bladder and intestines. He spends all the time in the diaper. Gosha never began to crawl, does not know how to turn over himself, sits only with support and quickly gets tired.
Parents say they were lucky with the character of George. Baby Emilia is capricious, and Gosha is calm and friendly. He understands two languages - Russian and Armenian, can occupy himself, loves to watch advertisements and dance to music from the TV.
Mom feeds a newborn daughter while dad plays with her son photo: Andrey Lyubimov for TD"Dad!" - George Jester, demanding to turn on the music. He dances sitting - moves his arms, shoulders, torso. Smiles, laughs. Weak clubfoots remain motionless. Great -grandmother, grandmother, dad and mom look at the child with love. With an awkward apologizing smile: “Yes, he is like that with us. But this does not matter? After all, he is still good? "
In the summer of George, only a few kilometers are taken to the sea, to the Baltic coast. Gosha loves water, feels it well. He also loves his grandmother, feeling her pain. And when Tati begins to cry, recalling the Great George or the murdered husband, the little George comforts her - hugs, kisses, wipes her tears with his hands.
In the end, Gosha is easily given to someone else's aunt “on the handles”. It turns out that I, the mother of a 16-year-old teenager, also remember how it is to keep young children. This is the best severity in the world - the child is in his hands. Little George survived a lot of pain. I shuddered when I saw his crushed stomach. But the boy smiles as if there is no pain in the world.
Awakening after a short but strong sleep photo: Andrey Lyubimov for TD“He is completely different,” Vika emphasizes, rimming Emilia. “George does not allow us to smoke.” We do not think about the future, about what will happen to him in five, 10 years. For what?"
The Fruppolo House helps not to be afraid of the future to the family. The visiting assistance service helps 79 patients throughout the Kaliningrad region. Among them are both palliative patients and children with incurable diseases-spinal muscle atrophy, myopathy of Duchenn, organic brain lesions, lnenx-gasto syndrome, stero-rustic nephrotic syndrome, intricate myopathy, mixed hydrocephalus, tetrapazemic, syndrome, syndrome Bulbar disorders. This is a project of the charity organization "I believe in a miracle." Her experts at any time of the day and night in the event of an emergency go home to their wards, and also make daily planned trips. In addition to doctors and nurses, parents and lawyers help parents and children. To pay for these specialists, the purchase of drugs and tickets needs money.
Please support the work of the Fruppolo House so that both the relatives of George and the parents of other children are not afraid of the future. No matter how vague, terrible and hopeless it may seem.