There is a kind of discrepancy between Sasha’s ability to understand everything and his disability to speak. Doctors consider him advanced. It’s a real ordeal to see this discrepancy. It’s an ordeal for Sasha, too. / Victor Kostyukovsky
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Five Years and a Hope
// Sasha Deyno needs to be operated in Germany as soon as possible
I haven’t seen Sasha for half a year. He seems to have grown up. After we published the “Five Years As One Fit” article, Kommersant readers donated enough money for a unique checkup, which this boy with epilepsy underwent in Germany. Doctors from the Bavarian town of Fochteroide came to a conclusion that Sasha could be rescued, and an operation was needed. It costs ˆ67,000. Sasha’s parents haven’t made that much money since I saw them in December. To tell the truth, they have no money at all.
“Meow,” says Sasha showing a fat plush cat to me.
Irina interprets, “He wants to say he has a new “Meow.” Remember his old pal? He got lost in Germany.”
“Meow,” Sasha confirms it.
I hardly dare ask about the details of the loss, and I am once again amazed by Sasha’s ability to understand everything, though he barely speaks. In his eyes, moves and reaction I can see – he understands everything! His parents also know it. So do the doctors, and not only do they consider he is as much developed as children of the same age – he is advanced! He understands everything, just like we do. He only speaks his own way. It’s a real ordeal to see this kind of discrepancy. This time it seemed to me it was an ordeal for Sasha, too.
His speech development delay is caused by a rare disease – occipital epilepsy (it was determined by the Germans in April, whereas Sasha’s disease had been referred to as temporal lobe epilepsy). Last time I wrote that Sasha may have a dozen attacks daily.
“It’s good that you’ve come today,” Irina says. “The day before yesterday he had attacks, and then he slept all day long.”
Does it mean that nothing has changed?
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No, it doesn’t. Much has been improved, but not everything yet.
Sasha’s parents are so much grateful to the Kommersant readers who collected 902.750 roubles for a checkup in Germany, in the epilepsy center of the Clinic for neuropaediatrics and neurologic rehabilitation. The boy was in charge of the Chief of the Clinic Hans Holthausen, one of the best epileptologists of the world.
First time Sasha’s diagnosis had been set by his physician, member of the European Academy for epilepsy Sofya Boldyreva from the First municipal children’s hospital of St.-Petersburg. But there was so much she couldn’t tell for sure. Why can Sasha speak, with that lesion focus of his? In theory, he wouldn’t be able to speak at all. Unfortunately, according to Sofya Boldyreva, in Russia there is neither equipment nor specialists to carry out an adequate checkup, so that neurosurgeons could use the material in further treatment. So the doctor had to turn to her German colleagues. They have the equipment, specialists and expertise.
Irina says, “In Germany I was astonished at the staff, not even at the equipment. Everyone is so kind and caring, and they trust the patients. Doctor Holthausen showed the MRI images to me and told me in detail where the affected zone was, and where the lesion focus was, and where the impulse started from, where it affected healthy cells, why the centers responsible for speech and eyesight suffered. I listened to him fearing that he might be interrupted – he is a “big” doctor, and he should always be in a hurry – and I was afraid I wouldn’t learn something very important. But he was not interrupted, and only when I left the room, I understood that he always speaks with mothers that way because it’s them who will decide on an operation. What a strange man – he though he needed to persuade me!”
We’re going for a walk, Sasha puts on his baseball cap back to front.
“Rane!” he exclaims as we take to the street.
I don’t need any prompting – I know that he rejoices at the lifting crane he sees. Kupchino, Petersburg’s dormitory suburb, is being expanded.
Sasha performs his usual ritual visiting the swing and the slide. Watching him, you’d never say he has a grave disease. But an attack can start at any moment, and you can neither anticipate nor avert anything. He may have different sorts of attacks. Those with respiratory standstill are the most serious ones. It’s dangerous because every new attack is another assault of ill cells against those healthy, which decrease in number each time. Irina was told about it in Germany. But the rescue is so close now – the lesion focus has been localized, and it means that an operation can be performed now. After it, Sasha will be getting better. For the first time in five years he has a chance, and we need to hurry because the attacks keep on, they destroy Sasha’s brain and threaten to destroy it forever.
Sasha takes his plush cat, and I finally dare ask Irina what happened to the old Meow.
Irina laughs, “We came to the clinic and put our stuff on a table in the hall. As we came back, we so that our friend disappeared. You remember, it was a cheap Chinese toy without an eye. Perhaps, some person of the staff thought it was an old rag and discarded it.”
Sasha hears that and laughs. He nods, confirming his mother’s story. He understands everything, he is unable to speak only.
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745.143 roubles needed to rescue Sasha Deyno, 5!
First it need be said that both companies where Sasha’s parents work, provided their help. Together, they paid for the pre-operation monitoring donating ˆ37.000 (they preferred that their names not be mentioned). So, we need to collect another ˆ31.520, which simplifies our task.
Here is the commentary of Sofya Boldyreva from the First municipal children’s hospital of St.-Petersburg. “Our German colleagues specified Sasha’s diagnosis: The lesion focus is located in the occipital part of the brain, but during attacks the temporal lobe is affected as well, and it is the part responsible for speech. An operation must be performed as soon as possible, because the process may become irreversible. Dr Holthausen’s center offers the best operational care in Europe, and the surgeon can remove the affected zone without damaging healthy cells. Sasha has good chances to recover. His brain cells will be restored, and he will be able to speak. I believe that everything will be all right.”
As usual, our permanent partner, Ingosstrakh, will donate 417.000 roubles (see details at www.rusfond.ru). So another 745.143 is needed.
Friends! It’s the first time in 12 years that we publish information about a child you once saved. We hope you’ll help this time, too. We appreciate every rouble you may donate. The clinic in Germany will receive charitable contributions in euros. Donations in roubles can be transferred to the account of Sasha’s mother, Irina Latkova, or to the account of the “Pomoshch” (Aid) charity fund, whose founders are the Kommersant Publishing House and Lev Ambinder. Your donations will be transferred to Irina Latkova’s account. You can get all account details with the Fund.
Russian Aid Fund experts
Victor Kostyukovsky, specially for Russian Aid Fund
All the Article in Russian as of June 06, 2008
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