Five Years as One Fit
// Sasha Deino urgently needs medical examination in Germany
Sasha is five years old, and he has been suffering of a rare and grave disease ever since his birth: symptomatic temporal lobe epilepsy. First, he had spasms, then began fits with respiratory arrests. Every time, Sasha’s parents Irina and Alexander go numb with fear: what if breath won’t recover? Doctors tried all sorts of treatment, but the disease progresses. Meanwhile, it can be cured. However, the child needs a medical examination to find the right treatment, but it cannot be carried out in Russia. It can be done in Germany, and will cost ˆ25,000.
Sasha and I are talking, and he has an advantage over me: he understands me well, but answers in a language known to him only. Fortunately, his mother Irina knows that language, and interprets for me:
“He wants to watch the cartoon till the end.”
We met on Sunday, and the entire family is home. Sasha joins his father on the sofa to watch TV.
Irina tells me their sad story:
“The disease’s focus is in the brain zone responsible for speech. So, doctors say the boy is clever, and even bright, but speaks badly because of epilepsy.”
The TV screen shows a running crowd of mammoths. Sasha watches silently, but it is clear he likes the cartoon. His face is very expressive. Irina goes on:
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“Sasha has been undergoing treatment ever since his birth. At first, medications were helping, fits almost ceased, and Sasha began talking. Then followed a drastic aggravation, he began loosing his balance and falling.”
Sasha and Alexander moved to the carpet to go through a huge family photo album. The boy is happily pointing at photographs, saying something in his language.
“He is telling when and where each photo of his mother, his father, and himself was made,” Irina interprets for me.
At one time, they thought that plasmapheresis -- blood transfusion and cleansing -- was helping. There was hope, but then it got even worse.
“How often do fits happen?” I ask.
“Very often. Sometimes up to fifty times a day. Today we already had them. It can start at any moment.”
“And what can you do then?”
“Nothing can be done, we just have to put Sasha’s head in a comfortable position, and wait till it’s over. It can start right now, or in a minute, or in an hour. You see, at any moment,” says Irina looking me right in the eyes and desperately trying not to cry.
Epilepsy is a very varied disease in its presentations and origins. Actually, doctors need to discover the origin in order to find the right treatment. It is a very complex examination; it requires special medical equipment and doctors’ highest qualification. In Sasha’s case, complete examination can be carried out only in special centers which are very few in the world. One of them is in Germany.
The family lives in a small two-room apartment together with Sasha’s great-grandmother. There are plenty of toys here, which cannot be said about the family’s means. Sasha has already got tired of looking at photos, and is now engaged in construction works together with his father. A huge crane, taller than Sasha, pulls up building blocks. Alexander is winding the handle, while the boy frolics, organizing a tempest at the construction site, making the blocks swing. Certainly, it is more fun when the cargo is swinging.
“All three of us will have to go to Germany. I won’t manage it alone. Imagine if a fit happens in an airport or at a bus station,” says Irina.
Sasha is never left alone. When Irina leaves for work (fortunately, she doesn’t have to work every day), her cousin and Sasha’s aunt stays with the boy. The parents do not sit on their hands: they take Sasha to a special kindergarten where a speech therapist and a psychologist practice with him. They also take him to a rehabilitation center for brain disorders. All that time, every minute, Irina is on alert, expecting another inevitable fit.
“How did you learn where the examination can be done?” I ask.
“It was Sofia Removna who gave us a cue,” says Irina.
Sofia Removna Boldyreva, an epilepsy doctor from the St. Petersburg Children’s Hospital #1, has been watching Sasha for a long time. All these years, she has been closely cooperating with foreign hospitals, including the neuro-pediatric clinic and children’s epilepsy center in Bavarian town of Vogtareuth. She dealt with the clinic’s chief doctor, one of the most influential professionals among epilepsy experts, Dr. Hans Holthausen. So, Dr. Boldyreva arranged Sasha’s medical examination with Dr. Holthausen.
“Now we lay all hopes on Germany. Doctors will be able only afterwards to say how to save Sasha,” says Irina.
“Can it be a surgery?”
“Yes, it can. I’m afraid of that variant, but if it is a chance, I’ll certainly agree.”
“What of it turns out in Germany that Sasha can be cured only there? That would also be expensive,” I ask.
“I’m scared even to think of it now. And I don’t think of it. Right now, the main thing is the examination, isn’t it? Doctors need to figure out what to do. It is Germans who deliver treatment, and they have special technologies,” Irina replies right away.
The examination in Germany will cost ˆ25,000. The sum covers trip, accommodation, the examination’s price. What is that sum for Sasha’s family? “A mere fantasy,” says Irina. She works as a cash keeper in a bank, while Alexander is a manager in a book store. To raise the necessary sum, they would have to be saving their salaries for 2.5 years without spending money on anything else.
However, Sasha doesn’t have these 2.5 years in store. He simply can’t wait. His last fit might happen at any moment.
“We cannot afford delay,” Irina repeats what she must have heard so many times. She then gazes right into my eyes for a while, and goes on: “He is already five. School will start in two years.”
And she waits for my answer. And I don’t know what to say.
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518,700 rubles needed to save 5-year-old Sasha Deino
Dr. Sofia Boldyreva, member of the European Academy of Epilepsy, said: “The examination in Germany is now the only real chance to determine the strategy for saving Sasha Deino.” Russia does not have yet the necessary equipment and professionals “able to provide German neurosurgeons with the material for analysis”. Dr. Boldyreva’s colleague Dr. Hans Holthausen already knows a lot about Sasha and is ready to examine him. Dr. Boldyreva believes that Sasha is “a promising patient; he is clever, his intellect is completely relevant to his age; his speech will be all right if the disease is cured”.
Dear friends! In the 11 years of our Fund’s existence, we have never addressed you with such an unusual request -- to help pay for a medical examination. We usually tell you about cases where it concerns “life-saving, or no-choice” expensive treatment. However, life is unpredictable: we never know what it is going to offer next time. Here is a case just like that. We hope this time it will work out as well, and the little boy will gain his chance to survive, with your help. And if it happens that Sasha will afterwards need expensive life-saving treatment (which is very likely to happen!), the Russian Aid Fund will not stand aside as well.
As always, our permanent partner Kapital Investment Group will donate $15,000 [please see www.rusfond.ru for details]. So, with the examination’s total cost of ˆ25,000, Sasha needs 518,700 rubles more. Financial aid can be transferred to the Sberbank account of Sasha’s mother Irina Latkova. Companies can transfer donations for Sasha to the account of the Pomosh Charity Fund (established by Kommersant Publishing House and Lev Ambinder). From there, your help will be immediately transferred to Irina Latkova. The banking details are in the fund.
Expert group of the Russian Aid Fund
Viktor Kostyukovsky, specially for the Russian Aid Fund
All the Article in Russian as of Dec. 21, 2007
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