A story of little Marina from Russia

Irina Devyatkova, Marina’s mother, Lena Gratcheva, Advita, Russia

 

Marina from RussiaLittle Marina’s family got the shocking CML diagnosis of their daughter when she was only 2 years old, in the year 2003. It all came out so unexpectedly, when her parents took the little girl to the doctor for the regular check-up. The WBS Count showed a threatening figure of 110,000.

The only treatment that existed at that time was hydrea. We heard about the existence if Imatinib though, however unfortunately it was not available in the country. The drug was too expensive for us to buy from abroad. Luckily we could get Imatinib later when it was approved by the government in the list of the drugs that oncology patients could get for free. Marina started to take 400 mg Glivec daily and her blood results started to improve. The family started to hope for the best.

Every 6 month we were taking all the necessary test and then here it is. A little more than a year passed the bone marrow biopsy showed the Philadelphia Chromosome was back in the bone marrow again. The doctors increased the dose of Imatinib to 600 mg a day. However, unfortunately the things were only worsening and the doctors could see little Marina’s survival chances in Bone Marrow Transplant. Unfortunately, this was another shock that we got. Marina didn’t have a related donor and a huge amount of money was needed for the donor search abroad, as the Bone Marrow registry doesn’t exist in Russia. We went on searching the internet and became a new member of Advita Family. Advita is a charity organisation in St. Petersburg that helps people with onco-hematological diseases since the year 2002.. Advita put our story on its website and we were lucky enough to have lots of people and organisations’ support. The money for Marina’s BMT and our stay in St Petersburg was collected.

Marina had her Bone Marrow Transplant in February 2009, from an unrelated donor. Since then she has passed though quite difficult stages in her life very bravely.She was on Imatinib for some time after she was transplanted, but then it was stopped because of the severe side effects.

9 year old Marina is continuously going through various therapies in the hospital. Today she is at home till the end of February and doing very well. We are so happy and grateful to everyone who has helped. It is indeed hard to believe that all of this happened to us. And it is scary to think what if there were no internet…


 
   
 

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