Besides toys, there is an oxygen generator in Danya’s room – without it, his breath halts as the boy sleeps. One day he may fail to wake up. Danya’s parents sleep in turn – they have to watch by their son’s bedside.
Photo: Âèêòîð Êîñòþêîâñêèé
|
 |
A gulp of Hope
// Danya, 3, needs teaching to swallow, breathe and speak
Within three years and a half Danya had to experience so much that we can’t even enumerate all his diagnoses in this short article. Danya has been rescued, but the boy can’t swallow – he simply doesn’t have this reflex. Danya has meals via a probe, and he breaths via another tube. The boy can’t speak because of these tubes. Russian doctors can’t do anything for Danya. Only German doctors can teach Danya to swallow. They’ll be able to take the tubes away, and the boy will eat, breathe and speak. He’ll live. The treatment costs ˆ34.200.
Danya is so friendly and open-hearted, that he “has won all the doctors in the hospital”, as his mother Olga put it. Doctors went to the reanimation ward to see the cheerful and friendly patient.
When Danya was born, everything seemed to be all right.
“He’d vomit sometimes, but you know it often happens with children,” Olga tells me. “Even doctors said that it was natural. And by the time he got 1 year old he was afraid to eat because he knew what it ended with. He was so thin!”
And one day Danya scalded himself accidentally. He was not injured seriously. Nevertheless, the boy was taken to the First Children’s Hospital of St.-Petersburg. Marina Brazol is the head of the burns department of the hospital. She’s the laureate of the national award “Vocation”. They say she’s a heaven-born doctor. It was she who raised the alarm as soon as she cured the burn. She convened a conference of specialist doctors, organized the boy’s first true checkup – by that time the boy had gotten really emaciated. MRI showed brain tumor. But before the operation they had to rescue Danya from sepsis, and he got to the reanimation ward. It’s the place doctors came to when they wanted to see the two-year-old boy, who lay in his bed and smiled at everyone.
|
|
i
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.
The Russian Aid Fund
Address: P.O. Box 50, 125252 Moscow, Russia
www.rusfond.ru
e-mail: rfp@kommersant.ru
Telephone: +7 (095) 943-9135
Telephone/fax: +7 (095) 158-6904
|
|
|
Neurosurgeon Alsou Albukhanova told me, “The tumor was absolutely benign. One year has passed, and there are no relapses. But the tumor was situated in the bulbar zone, which is responsible for swallowing, and after the operation Danya ceased to swallow. We hoped that the reflex would be restored, but, well, alas, it didn’t come true.”
Danya’s smile is so nice that you can’t help smiling in response. He only can’t laugh because laughter is connected with breathing, just like cough and swallowing and many other things we don’t even notice. And Danya has to notice it all. He understands that he is special. He can see his younger sister Katya eat, laugh and speak herself without any help. And he is unable to do all these things, unfortunately.
“He understands everything,” Olga says. “It seems he comprehends more than he supposedly can. After the operation he grew up!”
Danya’s room is full of toys and different complex apparatuses and other equipment – two humidifiers, an oxygen generator, which is needed at night especially, because Danya’s breath halts without it, and filters, syringes and probes – half of the parents’ salaries is spent on it. Evidently, the parents sleep in turn – they have to watch by Danya’s bedside. They go to work in turn too – you can’t leave the boy alone even for a minute. No nurse will manage to carry out permanent sanitation, cleaning of the filters, and feeding the boy via the probe.
Olga’s letter to the Fund resembles an abstract of a medical record – it’s full of simple and unknown words, which are disturbing: lumbar puncture, hypoxia, apnea, ventriculitis, abscess, peritonitis, appendix removal, endobronchitis, commissures, bridging, cardiac arrest, and coma. This small boy had to experience it all.
And he smiles nonetheless.
“He got very patient and courageous,” Olga says. “I believe he’ll manage to overcome everything.”
There are inscriptions on the pieces of furniture and other things in the room: “chair”, “table”, “window-sill”.
“Why, he can’t read yet?!”
“He knows many letters, and it’s a developing method, it really works. You see, everything is OK with his intellect.”
I ask Danya where the chair is. He nods turning his head in the direction of the chair and casts a look at me.
We talk with Danya. Although ha can’t reply, you can hardly call our communication unilateral. His vivid and expressive face answers my questions without the help of the tongue.
I’ve been thinking over one thing: What would the mothers of sick children do without communicating with each other and without the Internet? In cases like the one of Danya our doctors appear utterly helpless.
“Only neurosurgeons and resuscitation specialists understand me,” says Olga. “As to pediatricians, they’d only say they’re afraid to even read the abstract of the record to the end.”
It was on the Internet that Olga found a similar case described by the parents of a child from Kharkov, Ukraine. At that site she learnt the address of a German clinic, where they helped the toddler restore the reflexes he’d lost, including the one of swallowing.
Olga e-mailed to Germany, and shortly after it she received a reply. At the end of August the neurological hospital for children and teenagers in the town of Heilingen is ready to welcome Danya Karpukhin for a checkup, treatment and rehabilitation course.
The Germans are ready to help, but the Karpukhins are not ready to go there. They don’t have the ˆ34.000 to pay the bill in Germany. To tell the truth, they have no money to buy the tickets to Germany. Their salaries are too small, and they have no other source of income.
&974.866 roubles needed to rescue Danya Karpukhin!
According to neurosurgeon with the First Children’s Hospital of St.-Petersburg Alsou Albukhanova, Danya’s “most important” muscles haven’t atrophied, “Their tone has been maintained, and swallowing can be restored with the right treatment and rehabilitation. Unfortunately, it’s impossible to carry it out in St.-Petersburg, or in this country on the whole – there are no specialists here. There are specialists in Germany.”
Ms Albukhanova means neurological hospital Hegau-Jugendwerk with a rehabilitation center for children, teenagers and young people in the town of Heilingen. Head doctor of the hospital, a specialist in neurology and psychiatry, Doctor Arne Foss and leading doctor of the critical care unit Doctor Paul Diesener responded to Olga Karpukhina, who asked for help. They report that they are ready to receive the boy and the mother at the hospital. “Diagnostics lasting for fourteen days will be followed by treatment,” the letter to the Karpukhins reads.
Hegau-Jugendwerk has charged the family with ˆ34.177.5. A usual, Russian Aid Fund’s permanent partner the Kapital investment group will donate 262.000 roubles (see the details at www.rusfond.ru). So, to rescue Danya, another 974.866 is needed. Another partner of ours, the “Podari Zhizn” (“Grant a Life”) charity fund, will pay for the airline tickets of the Karpukhins.
Dear friends! The holiday season is at its height, and there are fewer readers now than in any time of the year, that’s why we appreciate every rouble you may donate. You can transfer roubles to the bank account of Danya’s mother, Olga Vladimirovna Karpukhina. Also, you can transfer roubles and euros to the “Pomoshch” (“Aid”) charity fund, whose founders are the Kommersant Publishing House and Lev Ambinder). You can find the account details with the fund.
Russian Aid Fund experts
Victor Kostyukovsky, specially for the Russian Aid Fund
All the Article in Russian as of Aug. 15, 2008
|
|
|
