When Egor was six months old, the doctor said that it is not necessary to treat his Moebius syndrome, and that the boy is unlikely to live till the age of one year.
Photo: Dmitry Lebedev
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New Nerves
// Egor Semenov needs surgery
Egor Semenov is 3.5 years old. He has Moebius syndrome. It is a genetic disease. His facial nerves are not functioning. The boy cannot smile and does not feel his lips. He needs surgery: to stretch new nerves along his spine from the spinal cord to his nape, and around his skull to the lips. Otherwise, Egor’s face, not feeling its own growth, will deform so much that the boy will be unable to speak, swallow, and breathe.
Egor’s father is a construction worker, mother is a teacher. They live in a barrack for construction workers near a country-house village being built near the town of Dubna. They live in a small room. Toilet, shower, and kitchen are in the corridor. They are the only Russians in the barrack. All other workers are from Tajikistan. Apparently, Tajik people like children: everyone who meets the boy in the barrack’s corridor, strokes his head gently and smiles at him, despite that Egor cannot smile in return. The Tajik woman who cooks for the workers always admires and praises the boy, even if he breaks a cup or a plate in the kitchen. That must be a Tajik tradition to treat children so nicely.
Except the parents and Tajik people, no one gives attention to Egor. His mother said that when Egor was a baby, she asked the doctor why the child was not smiling. But the doctor answered: “So what?”, and did not diagnose Moebius syndrome, or simply did not know about this disease. Later, when Egor was six months old, and his parents eventually managed to find out his diagnosis, the doctor said that it is not necessary to treat Moebius syndrome, and that the boy is unlikely to live till the age of one year. When Egor was 2, he was not accepted into a kindergarten, because they said a child with paralyzed face has nothing to do there.
Egor meets me on the threshold of his barrack, covered with plastic siding on the outside. I squat, so as not to be 3 times taller than the boy. With this equality established between us right away, Egor immediately sees me as a friend, stretches out his hand for a handshake, and says:
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For those who are encountering the Russian Aid Fund for the first time
The Russian Aid Fund was founded in 1996 to assistant the authors of desperate letters sent to Kommersant. We verify the letters with the help of local authorities, then publish the letters in Kommersant, Domovoi magazine and on the site www.rusfond.ru. If you decide to help, you will receive the banking details of the authors of the letters, and the rest is up to you. You just help you help. This approach has been popular with our readers. More than $8.4 million has been collected. We also organize relief efforts during national catastrophes, for 53 families of the miners who died in the Zyryanovskaya Mine in Kuzbass, 57 families of the policemen who burned to death in Samara, 153 families of the victims of explosions in Moscow and Volgodonsk, 118 families of the sailors who died on the submarine Kursk, 52 families of the hostages who died in the seizure of the performance of Nord Ost, 39 families of those who died in the Moscow Metro on February 6, 2004, 100 families who suffered losses in Beslan. The Fund is the winner of the Silver Archer award.
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Address: P.O. Box 50, 125252 Moscow, Russia
www.rusfond.ru
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“Hi! Be my guest. Let’s have cake.” The boy mispronounces some sounds, because of his paralyzed lips.
So, we eat the cake. Egor assures that eating cake together with sausage is most delicious.
“Try it,” says the boy, biting a cake-sausage sandwich with pleasure.
By a surprising coincidence, it is the same sort of cake that I ate in Voronezh a year ago, when visiting Nastia Boyarintseva, the first girl with Moebius who had the first successful surgery in Russia. Out of my article about Nastia, Egor’s mother learned that Moebius can be cured, that there is in Yaroslavl the only surgeon in Russia who can implant new nerves from children’s spinal cords to paralyzed lips. Egor’s mother told me that she had talked to Nastia’s mother on the phone. So, now she knows that the surgery is difficult, in two stages, and the healing is painful. For six months after the operation, it is necessary to wait for the nerve to naturalize, and for the child’s corner of the mouth to jerk in a first semblance of a smile.
“Look, I’ve got a kitten,” says Egor, giving me a real kitten to pat.
Having done with his sweet sandwich, the boy begins entertaining me. He shows me the kitten, who is very clingy, that is the little animal remains hanging on a curtain if we bring it near to the curtain. Egor also shows his broken toy car. He explains that he broke it almost entirely, except for one little wire that he can’t tear up. And he tears it right away. Then, Egor shows a CD with a “very funny cartoon about Winnie the Pooh”. Later, it turns out the CD is broken either and we can’t watch it.
“And now, we’ll go to the park with you,” says Egor.
“No, Egor,” his parents reply. “We won’t go to the park. You just had running nose and fever yesterday. You can’t go out yet.”
Egor cries in return. He says he wanted very-very much to “go to the park with the uncle” [me]. The way he cries is amazing. His face remains absolutely motionless, and tears stand in his eyes. He cries like an adult man.
Certainly, we go to the park. Egor grabs my hand and drags me to see a fountain, an electric car track, an inflatable trampoline, and a car with pedals, which can be rented by pawning a passport.
Egor drives the pedal car along the park’s alleys, making circles. But then he loses me out of sight, stops, looks back, and cries again, bitterly, with motionless face.
“What happened, Egor?” I run up to him.
“I thought you got lost. Are you with me, uncle?”
And I have to answer something to him so as not to lie.
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501,507 rubles more are needed to save 3-year-old Egor Semenov
Yuri Filimendikov, deputy chief doctor of the Yaroslavl Clinical Hospital of Urgent Medical Aid, said: “Egor’s problem is the underdevelopment of the corresponding zones in the brain. They do not give impulses to facial nerves for moving facial muscles. In the rest, the child is quite normal.” The facial nerves paralysis, or Moebius syndrome, is a very rare disease. People suffering it usually live for a long time, but away from society. The adult patients’ facial frame is underdeveloped, the face skin sags, even the eyelids hang down.
A year ago, the first surgery on a child with Moebius was performed in Russia. The patient was 7-year-old girl Nastia Boyarintseva. It was you, dear friends, who raised the money for that operation. It was performed by Yaroslavl’s surgeon Mikhail Novikov, together with U.S. doctor Julia Terzis, who had already successfully performed 25 such surgeries. In recent years, the world has achieved good results in curing the Moebius syndrome. Doctor Novikov had an internship with Doctor Terzis in Norfolk, Virginia. He now intends to carry out the cycle of surgeries for Egor Semenov on his own.
Doctor Novikov said: “We will use functioning nerves. At the first stage, we plan to stretch the nerves from brachial plexus via the transplants taken from legs and neck to the face, and to connect them with each other. Two more transplantations will follow in 6-8 months, one after another. First, hip muscles with their blood vessels and nerves will be transplanted into the face. Second, the earlier prepared nerves will be transplanted into the muscles surrounding the eyes. The treatment will require between 1 and 1.5 years.”
The surgery treatment will cost 799,357 rubles. This price includes all 3 operations. As always, our permanent partner Ingosstrakh company will donate $11.5 thousand. That is, 501,507 rubles more are needed to save Egor. The donations can be transferred to the Yaroslavl Clinical Hospital or to Egor’s mother Ekaterina Semenova’s account, which we specially opened for her in Sberbank in Moscow.
Dear friends! There were several times when you raised much more considerable sums – huge thanks to you! Yet, it is summer now, many people are away on vacation, and every single ruble is dear for saving Egor. The Fund has all banking details.
Expert group of the Russian Aid Fund
Valery Panyushkin, specially for the Russian Aid Fund
All the Article in Russian as of June 29, 2007
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