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Ivanov Ilya, 8 months

Date of birth: 11 February 2010.

Diagnosis: Wiskott-Aldrich syndrome. There are very few children with such diagnosis. In Russia no one has experience in treating these kids. Here Ilyusha doesn’t have a chance for survival. The necessary treatment can be done in Germany. The surgery costs 196,000 euros (273,000 dollars). It is a lot of money, but it can save the little boy’s life. He needs your help!
11 October 2010

Ilyusha’s dad has just called us with great news! Several months ago him and his wife have sent the documents to the governmental committee that is supposed to partially or fully finance Russian citizens’ treatment abroad. Until today there was no answer. The decision can take months, and very often the enquiries are completely ignored. That’s why Ilyusha’s parents started collecting money through charity funds, seeking help from media and private companies. Today they got a call and found out that the decision has been made in favor of financing Ilyusha’s treatment in Germany! The parents still can’t believe it’s true. We didn’t even hope for a positive answer, since we have experience in asking the government for help. Nevertheless, they are going to help this time. We still don’t know how much of the treatment cost will be covered by the government. For now we stop collecting money for Ilyusha until we find out all the details about government’s decision.

5 October 2010

Ilyusha is 8 months old. Considering his diagnosis, he has lived a very long life, as children with his diagnosis die very young. Here such patients are usually not treated, and the doctors suggest the parents to accept the fact that their child is going to die soon. To defeat the disease the patient needs a bone marrow transplantation. Russian doctors simply don’t have experience in such procedures on little kids. Unfortunately Ilyusha can’t wait until he grows up.

German doctors have agreed to conduct the transplantation in the Child clinic of Hanover. It can save the boy’s life. The only problem is that it costs 196,000 euros (273,000 dollars). The parents were able to collect 40,000 euros and this is all they can get. Without your help they can’t save their son.

From the letter of Ilyusha’s parents:

Sometimes things happen in our lives that make us feel absolutely helpless. In 2010 there were two events that have completely changes the way we think about life and death. In February we celebrated our second son being born. It was a miracle, and we named the newborn baby Ilyusha. The new life has started. In May we found out he has a fatal illness.

Usually when people hold their little babies, they imagine how they will grow and start crawling, and then start walking. Then they’ll grow even more and start talking. We looked at our Ilyusha and knew we’d lose him soon. We couldn’t believe it. Unfortunately, there cannot be any error, diagnosis was confirmed by many doctors. We immediately started looking for a way to save our son. It turns out that only the bone marrow transplantation could help. It also turned out that in Russia they don’t have experience in this procedure, especially on very young patients. Therefore, Ilyusha’s chances for survival here are very slim.

The specialists in the department of bone marrow transplantation in Child clinic of Hanover have a lot of experience in such surgeries and post-surgical rehabilitation. We’ll have a better chance to save our son’s life, but without your help we can’t do it. The success of this surgery depends on the time. The earlier we do it, the higher the chance for survival. Now our Ilyusha is already 8 months old, which means he is vulnerable to diseases. For a healthy child a simple cold isn’t a big deal. In our case even the cold can be deadly. We don’t have very much time and we have exhausted all of our financial sources.

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