Arseny needs an operation within one year, but his family cannot come up with 2.5 million rubles that quickly.
Photo: Valery Titievsky
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We’ll Save Them All
// The equipment purchased for Arseny Tiunov’s operation will help dozens of children.
The boy is only a year old. He has spondylocostal dysostosis, a catastrophic congenital distortion in the spine and ribs. 80% of children with this illness die in infancy from asphyxiation. The crooked spine and ribs simply crush the child’s lungs. The condition can be surgically corrected but the procedure has never been performed in Russia due to a lack of equipment and qualified surgeons. No one knows how many children in Russia suffer from the condition. Dozens, maybe hundreds. If we can raise the money to save Arseny, we can save them all.
Barely had they returned home with Arseny, their newborn son, did Anton notice that one of the boy's shoulders was higher than the other.
“We thought it was neuralgia,” Anton said, “Trauma from the birth. We hoped that it would go away with massaging and physical therapy.”
The Tiunov family is from Novosibirsk. Anton works for a developing company that oversees construction and investment in Novosibirsk. He is in Moscow on a business trip, attending a professional development seminar. We sat in a cafe as he told me the story.
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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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Telephone: +7 (095) 943-9135
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“The Russian Aid Fund asked me to get a document from the social security office saying that we’re a poor family. But we’re not a poor family. I have a good job. My wife has a good job. She’s a lawyer. I collected 500,000 rubles, borrowed it, that is, and had some savings, too. I could probably sell my car for another 500,000 but…”
Anton goes quiet. He’s 24 years old, still a young boy himself. He is silent because his son’s operation would cost two and a half million rubles.
“I could probably collect two and half million. But there’s so little time. My son needs the operation within a year.” For a second there is a boyish embarrassment in his eyes. “There’s no way I could get two and a half million in a year.”
I look at this 24-year old and think to myself that he has done marvelously. The children’s clinic told him that it was scoliosis, but Anton didn’t believe them. He looked online and found that in the Novosibirsk Traumatology and Orthopedic Research Institute across the street worked one of the best specialists on spinal diseases, Dr. Mikhail Mikhailovsky.
Anton took his son to see Dr. Mikhailovsky. Anton’s wife, Lena, cried when she heard the diagnosis and didn’t want to believe it. Anton didn’t believe it either. His wife or the doctor. He went online again and found two more of the best vertebrology specialists in Russia. One was in Moscow, the other in St. Petersburg. He called them and sent photos. They confirmed the diagnosis and added that, indeed, Mikhailovsky is the best spinal surgeon in the country.
“I would have taken him to St. Petersburg,” Anton said, “but it’s ridiculous to fly to Petersburg when the best in the country works across the street.”
Dr. Mikhailovsky was honest with Anton that he had only read about spondylocostal dysostosis and heard lectures about it at conferences. In Russia no one has ever done this kind of operation. He could go to Switzerland, but…
“If it were just one trip to Switzerland,” Anton said, “I would take my son and go. But children grow. Every six months you need to do another operation and move the implants on the ribs. I don’t have the money to take my son to Switzerland every six months.”
Dr. Mikhailovsky suggested that Anton buy the implants and buy the equipment needed for the operation. He (Mikhailovsky) would go to Switzerland to participate in a similar procedure, then the Swiss doctors would come to Novosibirsk to help in the first-in-Russia spondylocostal dysostosis operation, performed by Dr. Mikhailovsky.
“Get the money for the equipment,” the doctor told Anton. “Every time we need to operate we’ll rent the equipment from you. Over time it will pay for itself.”
Anton grew quiet. I looked at him. Such a young face, with an almost childlike ruddiness. I remain silent and think about how this young man across the table from me has only one year to develop and entire school of medicine for the sake of saving his son. Finally Anton speaks again.
“But I can’t just keep this equipment at home in a drawer and rent it out to children with the same condition as my son. I don’t even know what the equipment looks like. I imagine surgical clasps and knives. But that’s just it, I don’t need these knives and my son doesn’t need these knives. The country needs them. Everyone. I would buy them, but there’s no time.”
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To save Arseny Tiunov the family still needs 993,200 rubles
Dr. Mikhailovsky, head of the children’s vertebrology department at the Novosibirsk Traumatology and Orthopedic Research Institute explained the situation.
“The child has a rare condition called spondylocostal dysostosis or Jarcho-Levin Syndrome as they call it in the West. It is a combination of many congenital spinal and rib conditions, which leads to a very quick deformation of rest of the skeleton. According to Western orthopedists more than 80% of children with the condition die in infancy asphyxiation.
In the most developed countries in Europe and America the condition is treated with surgery and special implants and equipment made in Switzerland. The treatment has many stages but as a result doctors can normalize the form of the chest cavity and spine and restore proper breathing. In Russia no has been treated for such a condition. Dr. Mikhailovsky suggests that it’s because of the high cost of the implants and equipment. The entire set costs two and a half million rubles. If we can help Arseny Tiunov it will start a new school in vertebrology in Russia.
The child’s father, Anton Tiunov, is an economist in a private company and, as he says, “not poor.” He’s managed, with help, to collect 500,000 rubles and is hoping to raise as much by selling his car. He needs another 1.5 million rubles. That is why Anton came to us at the Russian Aid Fund. As always, our partner, Capital investment group, is offering $20,000. That means that 993,200 rubles remain.
Dear friends! The “velvet” season continues and every donation is important, even “the most insignificant.” Every transfer is gratefully accepted. Money can be transferred to Arseny’s account at the Novosibirsk Traumatology and Orthopedic Research Institute or to the Moscow savings account of his father Anton Tiunov. All documents and proof of transfer are available at the Russian Aid Fund.
Expert Group Russia Aid Fund
Valery Panyushkin
All the Article in Russian as of Sep. 21, 2007
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