Sometimes Leucosis Returns
// Volodya Deev needs to have his bone marrow replaced
Volodya Deev is 16. Two years ago, he got ill with leucosis, and was cured. But sometimes leucosis returns. When leucosis comes back, chemotherapy does not help anymore, and bone marrow transplantation is needed. Even if money is raised, donor is found, and transplantation is done, the chance of survival is 50 percent. So, the leucosis returned.
Volodya speaks of his illness as if it were an annoying mistake. It is hard to tell whether the boy is trying to be manly, or is just careless. Volodya’s case-record includes a letter written by his fellow villagers. They see the boy’s decease as a terrible misfortune. They tried to raise money for Volodya’s medical treatment, but gathered enough only to buy one vial of the expensive medication that is used during bone marrow transplantation, so that a patient does not die of mycotic infection.
Volodya says that the village where he lived is very near Tula. The boy’s fellow villagers write that it is the zone of radioactive pollution after the accident at the Chernobyl nuclear power plant in 1986.
Volodya tells how he bought a second-hand motorcycle two years ago, after he had been cured of leucosis. He rode all over the village. He overhauled the motor, because the motorcycle was very old. The fellow villagers write nothing about the motorcycle. If the boy sells it, the money would be enough for one more vial of the expensive medication used during bone marrow transplantation.
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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
e-mail: rfp@kommersant.ru
Telephone: +7 (095) 943-9135
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Volodya says that leucosis in his blood was discovered when the family moved to Tula, so that the boy could study in a technic vocational school to become a car mechanic. Volodya says he finds that profession very interesting. In two years, he says, he will obtain a driving license, and will begin driving his father’s car. The boy explains that he’ll be in school for one more year, but then will not study further. He says it is not interesting to study, but it is interesting to work. He dreams of opening his own car repair shop, because it is better than working for someone else. That’s what Volodya promises to do in a year.
But, in fact, he does not have that one year. The fellow villagers write that Volodya’s family moved to Tula not because of the boy’s school, but because there are no jobs in the village. Had the family not moved, the leucosis would have been found too late, and the boy would not be alive now. The villagers write that Volodya had a twin-brother who died of leucosis at age 7, because the disease was not discovered in right time. Volodya’s mother claims that her second son died not of leucosis, but drowned in a river. Volodya doesn’t speak of his brother. When he is asked whether he has any siblings, he replies that he has none.
The boy says he has a ‘breakdown’. He means the genetic breakdown which might have happened due to the radioactive pollution, or due to thousand other reasons. Volodya’s doctor explains that a genetic breakdown is a necessary but insufficient cause of the boy’s leucosis. Something which turns the breakdown into leucosis might happen to a child at age 3, or 7, or 14.
Volodya does not understand what is meant by ‘breakdown’. He says the doctors explained that to him, but he doesn’t understand. He thinks of his genetic breakdown like of a failure in the gear box of his father’s old car. Last time, when he was cured of leucosis, Volodya replaced that gear box himself, and so he hopes the doctors will repair the breakage in his blood just like he repaired his father’s car.
If the family sells the old car, they would have enough to buy three vials of the expensive medication used during bone marrow transplantation. Neither Volodya, nor his father, nor all their fellow villagers together, have the money for searching a bone marrow donor in Germany, and for medications necessary for the transplantation in case the donor is found.
Volodya says he will now undergo a chemotherapy course and will be allowed to go home. He dreams of going fishing with his friends, taking a tent and a boat with them. Then he is to come to Moscow again in a month, to have the second chemo, and transplantation. Volodya is a little afraid of the transplantation: chemo is causing nausea, so it must be that transplantation is making people even sicker.
Volodya’s doctor hopes to achieve a short-term remission by the two chemos. If the donor is found by the end of the second chemo course, Volodya will have a chance to survive.
The boy doesn’t like talking about his illness. He think it is better to talk about cars, and not people. Someone could have explained to Volodya that to find a bone marrow donor is harder that a most unique part for a most rare car. But no one does.
Breakdown, they say.
&Volodya Deev can be saved by 848,650 roubles
“Volodya Deev’s life can be saved only by transplanting to him the bone marrow from another, healthy, person,” said Doctor Mikhail Maschan, head of the general haematology department at the Russian Clinical Hospital for Children. The 16-year-old village boy from near Tula has a recrudescence of acute myelogenous leukemia. It means that once ill with leucosis, Volodya was cured. The remission was achieved by means of chemotherapy. Yet, several months passed, and the illness returned. Now, transplantation only will save the boy. The transplantation goes this way: a donor’s stem cells are brought into a patient’s bloodstream thru a catheter. These healthy stem cells survive in the new body, and replace the diseased bone marrow.
Unfortunately, Volodya’s relatives cannot be his donors. Volodya had a twin-brother, but he died several years ago. Russia does not have a good donor data bank. Thus, it is already a tradition to search for a suitable donor in the world’s register. Germany has the Stefan Morsch Fund which has a good data bank. Searching for a donor and taking stem cells from him costs ˆ15,000 (516,450 roubles). The Russian Fund of Help has been successfully cooperating with the German fund for some time already, and the fund has already begun searching for a donor for Volodya Deev, on the security of our guarantee.
Mikhail Maschan thinks that the period of cell acceptance is the most dangerous one. It poses great threats, the most dangerous is infectious complications. In order to safeguard Volodya, 11 packages of antifungal agent Vifend, worth 30,200 roubles per pack (that is 332,200 roubles), will be needed.
Thus, 848,650 roubles will save Volodya Deev.
This time, we do not have a permanent partner, who usually donates a considerable part of the sum. So, we lay all hopes only on you, dear friends. Donations in euros can be sent directly to Morsch Fund, and rouble donations – to Moscow supplier of Vifend, or to the Sberbank account of the boy’s mother Elena Alekseevna Deeva in Moscow. The fund has all banking details.
Expert group of the Russian Fund of Help
Valery Panyushkin, specially for the Russian Fund of Help
All the Article in Russian as of Mar. 16, 2007
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