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Internet against cancer

September 22, 2006, 0:00 2855 Author: Marianna Belenkaya RIA Novosti, Moscow

MOSCOW. (RIA Novosti political commentator Marianna Belenkaya) - We are no longer surprised that we can find everything on the Internet. Sometimes, we can save our lives by going online.

I'm not talking about some virtual games. Today, the Internet increasingly often helps save real human lives. The Internet, and its Russian domain, Runet, is becoming an effective instrument for helping those who need it - sick children, adults, the elderly, the homeless, and orphans. "Urgent Aid Needed!" Such banners are appearing on the Russian Internet more and more frequently. News sites, e-mail servers, women's forums, artists' websites - the list can be extended indefinitely. Opportunities for receiving help through the Internet are expanding geographically as well.

"Any dissemination of information costs an extra two or three thousand dollars. I've learnt it from my own experience," Olga Gronina, known on the Internet as Olgatt, told RIA Novosti.

She is one of the most popular users of the LiveJournal, or JJ in Russian abbreviation. Almost 3,500 people are permanent readers of her Internet Diary. Olga went into charity about two years ago. The same LiveJournal encouraged her to go for it.

"The first case started with a request, which I came across in the LiveJournal. A single mother with four children needed money urgently. A fund-raising campaign was a huge success. Later on, another user of LiveJournal needed money, and we collected it for him, too. This is how it all started. After some time, we gained a reputation, and more users," Olga recalls.

A year ago, Vladik Kuzmin, a small boy with a cancerous tumor from Khabarovsk appeared in her life. Olga does not remember exactly how his parents contacted her. But this is not so important after all. Raising solid funds started with his case. During his short life the boy went through several operations in Russia, but to no avail. Russian doctors acknowledged that his tumor was inoperable, but their Japanese colleagues volunteered to try and save the boy. But they asked for about $300,000. Olga started her search for money. But she soon found out that the whole sum was not necessary. German doctors learnt about Vladik from the Internet, through the same LiveJournal, and said that the treatment would be by an order less. Volunteers contacted the hospital, prepared the required papers, and in late August Vladik went through a successful operation, and will soon return home. The Internet community has saved his life.

"The expenses for Vladik's treatment were brought down from $300,000 to $35,000. We collected even more than needed. All in all, we raised about $75,000 to help Vladik and other children. And this is just through my modest blog.

Internet fund raising is based on trust. Like other charity people, Olga carefully checks all information, meets those who need assistance, and reports on every collected sum.

All repeat in unison that it is not possible to provide help to everyone who needs it. Therefore, the majority try to identify categories of people they will help.

Olga, for example, decided to support two wards at the Institute of Radiology and Nuclear Medicine. Children come to this institute from all parts of the former Soviet Union.

Journalist Maxim Kononenko is another popular hero of the Runet. He is known as Mr. Parker (mrparker in LiveJournal). He told RIA Novosti that he gives priority to requests coming from the Children's Hearts foundation, and the Donors-to-Children organization.

"I've made this choice because they need help urgently - otherwise they don't ask for it. We don't have any special criteria, but are mostly guided by intuition. If we feel that someone will receive help without our participation (as a result, say, of a massive Internet or media fund raising campaign), we do not waste our time because we could help someone else instead. Our patients are those whom nobody else helps," Mr. Parker said.

When he says "we", he means the Chinese Pilot organization (Chinese_pilot in the LiveJournal). He said that in the past year and a half they have conducted about 30 campaigns and collected about $100,000.

Like Olgatt, Mr. Parker first started collecting money for medical treatment in the LiveJournal. He met a girl who needed $3,000 for an urgent operation. This may seem a small sum to some people, but it was unrealistic for the girl. The request appeared in the LiveJournal, where about 3,000 people read Mr. Parker's blog every day. They found the money, and having realized that it was possible to help real people, could not stop any longer. Mr. Parker said that "the Internet is a powerful force, which connects a lot of people, and if everyone donates 10 rubles or 100 rubles, we get solid sums. But there are people who give tens of thousands without asking almost any questions."

The Internet levels out the rich and the poor. Charity people often say that many who are ready to offer their help, are often embarrassed by their small donations. But not infrequently, 100 or 200 rubles mean the difference between life and death.

Money is needed not only for medical treatment. Patients require special diets, care, medicines, cell cards, toys, and clothes. Parents do not have time to work because they have to look after their children in hospitals. They need money just to survive and support their children. Sometimes, they simply need a kind word.

"There is an amazing girl called Katya from Krasnoyarsk. She cannot help children in the Moscow-based Russian Clinical Hospital for Children (RCHC) because she does not make much money. She cannot come to see them in Moscow, but she writes to them incredible letters. Our children are isolated from the world for long stretches at a time, they live in hospital, and her letters make them happy," Yekaterina Chistyakova, a coordinator of the Donors-to-Children group told RIA Novosti.

As many other charity people and volunteers, she was drawn into this work by a particular case.

Yekaterina and her colleague Anna Yegorova (chistyakova and anna_egorova in the LiveJournal) came to the RCHC to donate blood for a little girl, Polina. They could not walk away. "It is not possible to help halfway - give blood and forget about the child. You are drawn into it. They need medicines and better services. It is very difficult to give a little money, and walk away, proud of oneself," Yekaterina recalls.

Gradually you realize that it is easier to help several people in a row than just one. You get the experience, you know where to go for medicines, how to help quicker and better. Yekaterina and Anna have started creating an electronic database for RCHC donors. They are looking for and instruct donors themselves. Before, in the RCHC, like in many Russian hospitals, blood donation was spontaneous, and mostly a burden for the already exhausted parents of sick children.

"Owing to the Internet, there are practically no problems with blood donations in the RCHC," said Yekaterina, modestly omitting the titanic daily efforts of volunteers, who have made this possible. About a thousand people per day visit their site at www.donors.ru. There is also the LiveJournal section on donors, devoted to free blood donation, and a hospital group - rdkb (the Russian abbreviation). Yekaterina and her colleagues resolve not only blood donation problems through the Internet. "The Internet is irreplaceable when it comes to medicines one cannot buy in Moscow. Sometimes, they say that a medicine will be available in a week or two, but patients cannot wait that long, and we look for it whenever we can. If it's a rare drug, we look for it abroad, if it's something regular, we go to next-door neighbors - Ukraine and Belarus," Yekaterina said. She quoted this summer's example when there was a shortage of special soda required for chemotherapy. Paradoxically, expensive pills were available but not the cheap soda.

Yekaterina believes that in ideal charity people should find the money for those types of treatment that are not covered by government insurance. They could, for instance, search for a bone marrow donor. Russia does not have a registry of such donors, and a search for a donor in German registry costs 15,000 Euros. The operation and treatment are free in Russia, but it is much more complicated than it seems. The government gives enormous money for basic treatment - chemotherapy and antibiotics. But this money is enough only if the patient does not have complications after the operation, which happens very rarely. More money is needed to treat these complications, which may simply kill the child. Apart from that, charity people sometimes replace the state - they look for medicines and buy things for the sick children. In fact, they do everything - search for donors, buy washing machines for hospitals, and a lot of other things.

Sometimes, the Internet helps dreams come true. Adults do not even have such dreams, but children take them for granted. In June 2005, on his 10th birthday, Dima Rogachev shared his dream with Anna Yegorova. He dreamt of eating pancakes with President Vladimir Putin. He came to Moscow from the village of Penevichi in the Kaluga Region to be treated for leucosis. The boy did not want to go to Moscow and take his only chance to be saved. His Kaluga doctor promised Dima that in Moscow he was sure to eat pancakes with Putin. Dima agreed. In Moscow he went through chemotherapy, and a very intricate unrelated bone marrow transplantation. However, in six months he had a setback. The diagnosis was made on the eve of his birthday. This was when the boy recalled his dream: "I know that the President can't wait to eat pancakes with me, but I'm busy all the time doing chemotherapy, or the transplant. He's waiting until I have some time," Dima reasoned.

Anna Yegorova wrote about Dima's dream in the LiveJournal. Mr. Parker read this, and contacted the President's press service. At first, the boy received a greeting card from Putin, and a car, and two months later the Russian President came to the hospitals to eat pancakes with him. Even the hospital administration knew nothing about this private visit. As a result, the President promised that a specialized clinic for children with blood diseases would be built in Moscow. This is how the Internet helped Dima not to lose faith in people. "I have always known that he will come to see me," the boy said on the eve of the visit. Any child needs very little - just to see dreams come true. Dima continues fighting for his life. Doctors and parents of other children wait for the President's promise to become reality.

All patients need attention and support of government officials. Even the Internet can do nothing without government backing. The situation is particularly difficult when children from former Soviet republic come to Russia for treatment. Their parents have to pay even for the basic treatment and stay in hospitals.

"This is fair because the parents of Russian children also have to pay for treatment in Israel, Germany, or other countries," explained Yekaterina. "But governments do not always help their young citizens, although sometimes there are exceptions. The Azeri President helped find the money for Kanan Merzoyev's treatment in Israel." Regrettably, the boy was not saved - he was only 10.

Quite often the required sums are collected with the help of Internet users, national communities, journalists, and the church. Internet users help put children into hospitals, find those who can translate documents, and even help with the visa, like in Kanan's case. A LiveJournal user sent a request to the Israeli Embassy in Moscow, and diplomats came to the Embassy on their day off to issue Kanan a visa. But sometimes, help comes too late.

* * *

You can read about Kanan and many other children in the LiveJournal. Go to nastenka_fund (the English version is help_journal, the site is bilingual - www.nastenka.ru).

Why Nastenka? The amazing man, who created the bulkin site, is trying to help sick children incognito. This is what he writes: "...There was a little girl named Nastenka. When she was a year and a half, she was diagnosed with the Wilms tumor. In a year her kidney was removed, bone marrow transplanted, and chemotherapy performed. Her parents did not have the money to buy medications that could save Nastenka. She died at the age of three behind the glass of a sterile ward. Her parents did not have other children."

The foundation which helps children with cancer was named in Nastenka's honor. Then a section of the LiveJournal took her name as well. It has extended its patronage to 50 children.

You can find through nastenka_fund and other sites mentioned Olga, Mr. Parker, bulkin, Yekaterina and Anna - these real people who do wonders every day. There are many others doing the same. There are many more kind-hearted people than we are used to thinking. But not all of them know how they can help.

You can look for requests for help not only at the said addresses, and in the LiveJournal (www.livejournal.com), but on other sites as well.

Here are some of them: www.pomogi.ru, www.pomogi.org, www.childrenshearts.ru, http: //www.kuraev.ru/forum/start.php. There is nothing we can do for Kanan, Polina, or Nastenka, but we can help others. The main thing is to help before it is too late.

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