Doctors increased the dose of Glivek from four to six ampoules. Marina chokes but swallows it all. The organism doesn’t take it easy. Marina now has several grey hairs; dermatitis, conjunctivitis and toxic hepatitis. Her liver has increased in size. At that time doctors understood that only radical measures will help the girl – marrow transplantation.
Photo: Âèêòîð Êîñòþêîâñêèé
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Her Last Chance to See the Sea
// Marina, 7, needs urgent marrow transplantation
Leucosis has left Marina the only chance to survive: marrow transplantation
On September 1 Marina Devyatkova went to school for the first time in her life. At school she studies well trying not to miss classes. But in fact she’d better miss half a year or the entire year. She should miss as much as needed to let doctors carry out marrow transplantation and corresponding treatment. Marina has leucosis. Her salvation costs 1.7 million rubles. The Devyatkovs do not have that bulk of money. However, transplantation is Marina’s last chance.
Not all friends of the Devyatkovs know that the girl is sick. When hey learn, they get truly surprised: you’d never guess the girl has a disease. Marina is almost always in a good mood, and she smiles all the time. Only her mother and grandmother see her get tired and fall in deep thoughts.
It always starts the same: medical examination, blood test. Irina, marina’s mother learnt five years ago that her daughter had a high leukocytes concentration. Hospital. Anxiety changes with panic terror: chronic myeloleukemia.
“The doctor mentioned a medicine, gidrea,” Irina says. “I asked him how long we should take it. He replied, “All life long.” I asked about the chances. He said, “Shall I tell you the truth? It is practically incurable.”
Irina was lucky: the doctor was experienced, that’s why he used the word “practically”. He knew that they have learnt how to cure the disease. But in Tyumen there are no relevant specialists, and the Devyatkovs will never be able to pay for it – they don’t have the money. The doctor even told her the name of a new medicine that works wonders – Glivek.
“Even at that time there were rumors about Glivek and its sky-high prices. A month’s course costs $3.000. And there a lot of courses. At that time I felt the situation was worst of all.
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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
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Telephone/fax: +7 (095) 158-6904
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I guess I understand why Irina thinks so. When there is no medicine to cure a disease, it’s one thing. When you can’t afford it, it’s quite another matter. You feel helpless: you can’t do anything for your child.
Meanwhile the child tells us about her first school experience, “I laughed so much yesterday!”
“During a lesson?” her grandmother asked seeming terrified. “And no one rebuked you?”
“No,” Marina replies. “We all laughed, and the teacher too.”
“What made you that merry?”
“We had a 5-minute physical training break, it’s so funny!”
If a teacher laughs with her small pupils, I should say they are lucky to have that teacher.
In 2005 Glivek was included in the list of medicines sold at lower prices. It was the time of big scandals, there was not enough Glivek for everyone who needed it. In fact distributors decided who was to live. The Devyatkovs were lucky, and Glivek was a true salvation during the first months. But Marina’s test upset the family: they one again found the notorious Philadelphia chromosome.
“Marina,” I ask the girl, “means marine. Have you ever seen the sea?”
Marina doesn’t answer, and her grandmother says in a low voice, “Doctors insist we should not go to the sea.”
The Devyatkovs live almost in the center of Tyumen, but their house looks rural, and they live in Lugovaya (Meadow) Street. There is a garden beside the house. Marina wants me to go there together with her, where flowers grow.
Suddenly marina starts singing adults’ love songs. And then she improvises on the spot composing songs in English. It’s actually not English. Rather, it’s imitation. However, her pronunciation is fine, especially when you hear her sing words like “every” and “one”.
Doctors increased the dose of Glivek from four to six ampoules. Marina chokes but swallows it all. The organism doesn’t take it easy. Marina now has several grey hairs; dermatitis, conjunctivitis and toxic hepatitis. Her liver has increased in size.
At that time doctors understood that only radical measures will help the girl – marrow transplantation. They will have to search in the international database of the Morsch Foundation. The search will cost ˆ15.000. And she also needs medicines.
Irina turned to St.-Petersburg’s Gorbacheva Institute for Children’s Haematology and Transplantology and the Russian Aid Fund. Irina is an accountant. Marina’s father is a driver.
The St.-Petersburg Institute is looking forward to welcoming the Devyatkovs. Doctors are ready to perform the operation.
So, hopefully, it’ll be the Baltic Sea that Marina will see for the first time in her life. If they manage to find the money. She will see a lot of other seas in the future.
&1.051.061 rubles needed to rescue Marina Devyatkova
Natalya Stancheva, chief of the admission department with St.-Petersburg’s Gorbacheva Institute for Children’s Haematology and Transplantology, told us, “Marina Devyatkova has chronic myeloleukemia, the stable phase. On the face of it, everything is all right; the girl goes to school, she smiles. But this remission is delusive. At the clinical and biological level, there is no remission at all. Marina has deviant Philadelphia chromosome in her cells. Glivek will cease to help soon. It’s dangerous. Stem cells transplantation would give the girl a chance to survive. We can’t procrastinate, now is the time.”
Natalya Ivanova from the Institute said that marina’s blood tests have been sent to the Morsch Foundation. A preliminary search found out that there are 50 people in Germany alone who can become donors to Marina. As to the world, the number of such people exceeds 300.
Donor search and activation costs ˆ15.000, with therapeutics costing 1.2 million rubles. As usual, As usual, our permanent partner, the Kapital investment group, donates $10.000 (to find details, follow the link www.rusfond.ru). Donor search will be paid by St.-Petersburg’s Advita charity fund. And this is what an e-mail from Itera International Group of companies reads, “Moscow hosted Itera’s cycling tournament, and the winners decided to transfer the prize (248.739 rubles) to Marina Devyatkova. This said, another 1.051.061 is needed.
Dear friends! You can transfer your donations to Irina Devyatkova’s account in Sberbank or to the account of the “Pomoshch” (Relief) charity fund, whose founders are the Kommersant Publishing House and Lev Ambinder. You can get all the details with the fund.
Attention! You can transfer money via electronic payment systems with credit cards and cyber cash (see the details at www.rusfond.ru). We’ll appreciate every ruble you donate.
Russian Aid Fund experts
Victor Kostyukovsky
All the Article in Russian as of Sep. 12, 2008
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