Vladik Zagidullin, aged 4, suffers of congenital anomaly of spine’s development and of ribs’ deformation. The more Vladik grows up, the more the anomaly progresses. It is necessary to save Vladik now.
Photo: Konstantin Vorobiev
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Clockwork Boy
// Vladik Zagidullin needs to be saved from progressing scoliosis
Four-year-old Vladik Zagidullin reminds a tornado: he creates chaos wherever he comes. The boy runs around the apartment noisily, and when he gets tired, he jumps from his mother’s lap to his father’s. A clockwork boy. Yet, he will soon stop jumping: he suffers of congenital anomaly of spine’s development and of ribs’ deformation. The more Vladik grows up, the more the anomaly progresses. By the time of coming of age, children with this diagnosis become non-mobile disabled persons with crooked body and ill heart. It is necessary to save Vladik now. However, the parents (a nurse and a carpenter) will never manage to raise one million rubles for the implant on their own.
“What do you want most?” I ask Vladik. I’m standing in the kitchen of a small apartment at Ekaterinburg’s outskirts, and the boy is running around me. Mobile like a drop of mercury, Vladik suddenly stops and becomes deeply thoughtful.
“I want to be tall! I want to be big!” he says.
“As tall as the fridge?” I nod at the tallest thing in the kitchen.
“Yeah!” Vladik agrees cheerfully.
I take him in my arms and lift him up. “As tall as that?” I ask. He smiles from ear to ear and nods in agreement.
This frail but very swift boy least of all looks like an ill person. He can’t stay calm even for ten seconds. He runs around the room, jumps from his mother’s lap to his father’s. Then, he sits down to play a videogame, and assures me that the lion with wings, which has appeared on the screen, is a really existing animal and that he himself saw it out of the window just a day before my visit.
Vladik’s health affairs are grave. He was born with a congenital spine anomaly and accrete ribs on the left side. When his mother, Oxana, showed the X-ray to me, I couldn’t believe at first that anything like this is possible at all. The rib cage is deformed. Its right side is the same as a healthy child’s. And the left side is a solid bone, instead of ribs.
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Vladik’s scoliosis progressed with each centimeter by which the boy grew. From his earliest childhood. The more scoliosis progresses, the harder it will be for Vladik to breathe, the less he will move, because his heart and left lung will suffer severely. When Vladik comes of age and stops growing, he’ll become a disabled person without chances to be cured. He’ll be very lucky if he can just walk. However, Vladik’s good fortune is that there exists a technology for saving him, and there is yet some time to correct the deformation. Meanwhile, Vladik’s ill fortune is that the time is running out (just a few months are left), and there are no money for the implant.
I leave Vladik to recite the alphabet to his father, Nail, and go to the kitchen with Oxana. She tells me that working as a nurse, and her husband as a carpenter, they earn very little money even for Ekaterinburg. Oxana didn’t need to say it, for it is obvious. Their one-room apartment is in a two-storey barrack-type house with flooded basement. People with good income do not live in houses like that. “It’s good we have this at least,” says Oxana, and adds: “I’m from an orphanage, and I know what it’s like to grow up without parents. You can’t imagine how clearly I knew what I should give to my son when he is born. Yet, when he was born, it turned out it is necessary to give him much more.” “And I’ll do it,” she adds after a pause.
Vladik has already undergone two surgeries in Novosibirsk’s Institute for Traumatology and Orthopedics (NIITO). The parents made debts to raise 33,000 rubles for the surgeries. “That is when I realized our son is a real man,” says Oxana. She saw Vladik grit his teeth when suffering pain. Yet, he hardly cried, and did not complain to anyone. “Surgeons from other departments in the hospital came to see Vladik,” says Oxana, proud of her child. Anyway, the surgeries did not bring the necessary result: back then, the doctors in Novosibirsk did not have the technology to overcome the complicated deformation.
Now, there is the technology. German doctors are ready to provide the instruments. It is necessary to buy the implant, but it costs over one million rubles. Even if Vladik’s parents sell all they have, it will be a catastrophically small sum. They have hardly returned their debt of 33,000 rubles. Meanwhile, doctors insist on urgent surgery. Best of all – in early April.
Vladik gets weary of this conversation. He takes me away from the kitchen to the room, to his videogame. A hippo appears on the screen. Below are three variants of an answer concerning where it dwells: South America, Africa, Asia. “In America!” insists Vladik. “Would you like to think for a while more?” I suggest. The child presses the button, and the game’s mechanic voice suggests thinking for a while more, but Vladik cares no longer. “Would you like to see how quickly I run on all fours?” he offers to me. He doesn’t need my consent. Vladik runs on all fours, then gives me a photo album with his pictures. There, he looks like a thoughtful and quiet angel, but I know it is a wrong impression.
He stops running and jumps onto my lap. I tickle him, he giggles, and goes off happily to his parents.
I sit thinking: darling, you won’t jump like that always, unless something is done urgently. It seems hugely unfair. Soon, parents’ love only won’t be enough to correct the injustice.
&Vladik Zagidullin needs 620,119 rubles more to be saved
Prof. Mikhail Mikhailovsky, head of the clinic for children’s and teenagers’ spine diseases at the Novosibirsk Institute for Traumatology and Orthopedics (NIITO), said that Vladik “suffers of spondyl-costal dysostosis, which is a severe innate disease of spine and ribs. The spine is curved, and the ribs have fused into a united conglomerate. The spine’s and rib cage’s deformation progresses relentlessly together with the child’s growth. Besides exterior deformity, there develops respiratory failure. Such patients look terribly already by 13-14 years of age; their life reduces due to severe parafunction of lungs and heart.”
When Vladik turned one year old, the NIITO doctors tried to help him by means of surgical “limitation of spondyl growth along the deformation’s convex side”. The surgery proved ineffective due to the lack of special instruments, and the deformation aggravated. According to the professor, there is now an opportunity to apply VEPTR instrumentation, which is absolutely new for Russia: “We consulted Dr. Rüdiger Krauspe from the University Clinic of Düsseldorf. He completely agreed it is the only chance to help in this case. He has vast experience of applying VEPTR.” Prof. Mikhailovsky believes that Vladik faces long-term and complicated treatment, and “will need multi-stage surgical interventions, but it is a good chance”. “We must use this chance,” said the doctor.
The implant for Vladik costs 1,037,119 rubles. If we manage to raise the money before March 28, the surgery can take place in Novosibirsk already on April 3 with participation of Prof. Krauspe. As always, our constant partner Ingosstrakh company will donate 417,000 rubles. So, Vladik needs 620,119 rubles more. Donations can be transferred to the NIITO in Novosibirsk or to the Moscow Sberbank account of the boy’s mother Oxana Zagidullina. Any donations will be accepted with gratitude.
Andrei Kozenko
All the Article in Russian as of Mar. 14, 2008
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