Nilufari Sharifbek is 17. She traveled from Tajikistan after being diagnosed with Ewing sarcoma. She needed an operation to replace her collarbone that was damaged by cancer, but the waiting list in Tajikistan was too long, and she was recommended to come to St. Petersburg, Russia. Nilufari’s family has four children. One of her brothers was born with chest deformities and is now disabled. Nilufari is billed full cost of treatment, and she will also undergo bone marrrow transplantation that will cost $25,000. Her family urgently needs support with paying for medical care and their living expenses in St. Petersburg. Please help Nilufari - she has a good prognosis, and your donation can truly make a difference!
Aug 04, 2009: Transplantation was postponed. Nilufari needs surgery to remove a part of her collarbone. Nilufari’s family needs help with paying apartment rent in St. Petersburg.
Sep 08, 2009: Nilufari was hospitalized for bone marrow transplantation.
Oct 02, 2009: Autotransplantation went as planned. Nilufari is now in 21st day and her leukocyte counts are recovering slowly. Nilufari suffered from severe mucositis when her tongue bled and she could not eat. She now feels better. Nilufari’s family still needs financial support. Her father cannot work at this time, as he has to stay with his daughter at the hospital.
Oct 26, 2009: Nilufari completely recovered after transplantation and was discharged from the clinic to be monitored as an outpatient. She feels relatively well.
Nov 30, 2009: Nilufari is undergoing a complex examination at Petrov Institute of Oncology. Her blood counts are growing very slowly.
Jan 01, 2010: The number of platelets in Nilufari’s blood is gradually increasing. Nilufari will be undergoing a tomography test on January 27th. The cost of test is approximately 18,000 rubles. The family continues to depend on the financial support.
Feb 28, 2010: Nilufari’s platelet counts are finally rising. She feels well and is in a good mood, but still wants to go home. Nilufari still has a large debt to the clinic for her treatment.
Mar 7, 2010: Nilufari is at home now and feels well. At the end of March she will have to undergo planned tests.
Apr 15, 2010: Nilufari is now at home, tended to by her grandmother and aunt. The next examination was going to take place in St. Petersburg after April 20, depending on issuance of passport for Nilufari. We hope that a sickness certificate signed by an oncologist will speed up the process and papers will be ready by April 20. For now, Nilufari was examined at home and results sent to the doctor in St. Petersburg who confirmed they were all right. Nilufari is feeling well and is in a good mood, her appetite is fine. The platelet count has gotten normal.
May 23, 2010: Nilufari came to St. Petersburg. She feels well and will begin tests on May 24th.
Jul 3, 2010: Nilufari underwent all planned tests. She is doing well.
Aug 18, 2010: Nilufari underwent full examination and went home. We are happy to report she is fine.
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Marina Kochemarova is 32. In her former life, she was a model and an active organizer of community events, such as motocross competitions. Then she had a terrible disease - synovial sarcoma - that almost killed her. After three years of fighting for her life, Marina won - but at the cost of losing her arm, and most of the shoulder. Because of this disfigurement, she is unable to wear regular clothes, as they cannot stay on just one shoulder. During years of treatment, Marina’s and her relatives’ savings were spent and they incurred debts. She now needs a prosthetic arm to attempt a return to normal life. However, it has proven very difficult to find a company that could make a prosthetic limb for such a radical amputation. The only company that was able to help was Touch Bionics from Scotland. They offered Marina three options, ranging from a cosmetic arm with limited function to almost human-like bionic arm. The costs of the prosthetic options vary from $34,000 to $101,000. Please support Marina and help her return to normal life!
Apr 01, 2010: Marina received a donation of $34,000 from Russian parlamentarian, Sergei Mironov. Thank you very much! Marina now needs help with paying for travel expenses to Scotland (close to $3,000).
Apr 14, 2010: Argumenty i Fakty newspaper has published article about Marina.
Apr 27, 2010: Marina will need to arrive to Scotland by May 2 for initial consultation and taking her measurements. Once her prosthesis is ready, she will travel to Scotland again to have it installed.
May 11, 2010: Marina returned from her first trip to Scotland where she had visited the clinic in Livingston, near Edinburgh. The clinic personnel spent several days matching the color of her skin to her right arm. Marina saw samples of the prosthesis and was very impressed by the quality. Once hers is ready, she will be able to bend the fingers. Marina has no doubt she will be able to wear short sleeves! In about two and a half months, Marina will return to Edinburgh to pick up the custom made prosthesis.
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Inna Shakhmaeva is 9 years old. When she was 4, she stopped breathing in her sleep. Miraculously, her parents managed to save her. She then spent four months in intensive care unit on artificial lung ventilation. Inna was diagnosed with apnea (Ondine curse). Eventually, she became stable and was able to breathe by herself. However, in three years, Inna suffered from the same health problem. The doctors were unable to help her, and she needed to be on artificial lung ventilation twice a week. As a complication, Inna often suffered from bronchitis.
Fortunately, her parents found out that Inna could benefit from an operation to implant a pacemaker. The surgery could be performed in Russia, but the pacemaker was manufactured in USA and cost $66,000. We contacted the manufacturer (Avery Biomedical Devices) and it graciously donated part of the equipment to Inna. By September 1, 2009 Inna’s parents and their supporters were able to raise the rest of the amount.
Jun 18, 2010: Today Inna had surgery to implant the breathing pacemaker. It took many months to have the device certified in Russia. Inna’s parents along with parents of other children who needed the pacemakers worked hard to get equipment certified as quickly as possible. Finally, their efforts were rewarded. We wish Inna and other children speedy recovery!
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Ian Korchenkov is 16 months old. He has an inherited disease, Wiskott-Aldrich syndrome that affects only boys. Sadly, Ian’s older brother died at the age of 2 from the same disease. But there is still time to save Ian. He needs bone marrow transplant that is the only cure for this disease.
Ian lives with his retired grandmother. Part of the money for Ian has already been raised, but he still needs $10,000 to pay for the search for the donor and delivery of transplant to St. Petersburg. Please help Ian survive childhood!
Nov 13, 2009: Ian is monitored at R. Gorbacheva clinic. He feels rather well, but his blood counts fluctuate, as well as hemoglobin levels.
Dec 09, 2009: “Ian was at the Children’s hospital No.1 from November 15 to November 25 for treatment of lymphadenitis. We are now at home, and Yan’s condition is relatively good. Once every two weeks we come for tests to R. Gorbacheva clinic. Ian started speaking, is very curious about everything and enjoys helping me with various little tasks. He is a very kind and happy boy. We are enormously grateful to everyone who responded to our request for help.”
- Ian’s mother
Jan 12, 2010: A donor for Ian was found. Transplantation is scheduled for February; the exact day is being verified. We urgently need to raise 2,500 euros for the delivery of transplant.
Feb 04, 2010: Ian will soon be hospitalized at Children’s hospital No.1 for tests prior to transplantation.
Feb 28, 2010: Ian’s transplantation is scheduled for March 15th. Within a week, we need to raise 2,500 euros for delivery of transplant.
Mar 14, 2010: Transplantation took place on March 13th.
Apr 03, 2010: Ian’s leukocyte count is back to normal. He feels rather well, has a good appetite and is in a good mood.
Apr 30, 2010: Ian suffers from stage IV intestinal GVHD. He is in intensive care unit in a serious condition.
Jun 17, 2010: Ian recovered and was allowed to go home. He will be now monitored as an outpatient.
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Olga Shmygleva is 24 years old. Since she was 19 and a second year student at a college, she has been fighting Hodgkin’s disease. Unfortunately, it has been recurring ever since, despite numerous chemotherapy protocols and bone marrow transplantation of Olga’s own stem cells, which she had in July of 2009. In October 2009, it was determined that transplantation was not effective and the tumor continued growing.
At this time, Olga is looking for a clinical trial that could accept her. She will most likely travel abroad once a good match is found.
Mar 19, 2010: Olga received an invitation for a clinical trial from Italy.
Mar 25, 2010: Olga is expected to arrive to the clinic on April 12.
Apr 13, 2010: Olga’s flight went well. She was met at the airport. On Monday she was hospitalized. She had a blood test and was installed a catheter. Today Olga had PET imaging, and another study is scheduled for Friday. She practically has to use sign language to communicate as there is no translator at the hospital.
Apr 27, 2010: Olga received therapeutic injections, as the initial diagnostic injection was well distributed in the body. If all goes well, Olga will be able to fly home on May 2. She will then return to Italy for follow-up tests in 40 days.
May 28, 2010: Olga returned home in early May. She now goes for weekly blood tests to monitor for possible toxicity. Yesterday she had the first CT scan since the therapeutic injection, and the results are very good! Only two enlarged lymph nodes still remain.
Jun 3, 2010: An article about Olga was published by the Russian America and Argumenty i Fakty.
Jun 10, 2010: We are happy to report that based on control scans, Olga is now disease-free! She was the first patient on the trial with such a good result.
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Olya Bogatova is 10. In June 2009 she started feeling unwell and was having frequent nosebleeds. Eventually, she was diagnosed with acute lymphoblastic leukemia. At the hospital, Olya developed serious complications: kidney failure and diabetes.
In November 2009, Olya’s doctors recommended her to undergo bone marrow transplantation. An unrelated donor needs to be located at the international bone marrow donor registry, and the search costs 15,000 euros. Olya is being brought up by her grandmother who had to leave her job to care for Olya at the hospital. They need financial support to pay for the donor search and for Olya’s treatment. Please help Olya!
Aug 23, 2009: Olya had serious complications due to stones in her kidneys. She is now undergoing another course of high-dosage chemotherapy. The girl was recommended unrelated bone marrow transplantation. In the next few days, she will be typed, and the results will allow determining whether Olya has matching donors at the international registry. Olya’s family still needs financial support.
Nov 12, 2009: A decision was made to initiate a donor search for Olya. Therefore, we need to raise 15,000 euros for the donor search and 2,500 euros for delivery of transplant.
Dec 24, 2009: The money sent for Dasha Kuznetsova’s donor search will be used for the donor search for Olya instead, since Dasha could not wait for the search results and urgently underwent transplantation from her mother.
Jan 12, 2010: Olya feels well. She is starting a planned course of maintenance therapy. The main course of treatment is completed, and Olya achieved remission. She still needs therapy with Noxafil.
Jan 26, 2010: “Happy World” fund raised the rest of the money for the donor search and delivery of transplant for Olya. Therefore, as of now, the fundraising for the donor search and delivery of transplant is over, but Olya still needs Noxafil that costs 80,000 rubles per bottle. Each bottle lasts her a week.
Jan 30, 2010: Olya started a scheduled cycle of maintenance therapy. On January 27th she had a lumbar puncture and bone marrow puncture. Due to Dexamethasone therapy, her blood sugar rose and she was assigned a sugar-restrictive diet. Olya’s favorite foods are not disallowed and she is very sad. She also wants to learn to play a guitar and would be very happy if someone could give her the instrument. Olya’s grandmother was hospitalized due to high blood pressure, and Olya is being cared for by her mother.
Feb 28, 2010: During the last month, Olya had pains due to stones in her ureters. She had surgery to install shunts in ureters and she now feels better. Olya was able to start another cycle of maintenance therapy. She still has fungal infection in her lungs, and CT scan even showed some worsening. Olya needs to continue Noxafil therapy: 1 bottle lasts her 5 days. The search for the bone marrow donor is ongoing.
Apr 15, 2010: Olya is recovering after another chemotherapy course. She had serious complications – kidney bleeding – which the doctors managed to overcome. Fortunately, the last lung tomography and blood counts allowed the doctors to cancel antifungal drugs, and Olya does not need Noxafil any longer.
May 6, 2010: Olya was hospitalized due to fever. The doctors are investigating the cause of pain in her kidneys’ area; so far, tests show no stones in Olya’s kidneys.
Jun 4, 2010: Olya feels better, her fever is gone. There is another problem however. Olya has an unstable blood pressure and needs a blood pressure monitor to control it. Olya’s grandmother is asking to help them in purchasing it.
Jul 6, 2010: Olya is at home but every Tuesday she comes to the outpatient unit for tests. If the results are good, she goes back home. Olya and her grandmother are very happy that they don’t need to stay in the hospital all the time. However, Olya is missing her friends as they all left on vacation. So she spends a lot of time making up fairy tales.
Recently, Olya got a guitar as a gift and now she wants to learn to play it. Before the girl got sick, she really wanted to go to music school and her teachers were noting her perfect pitch and strong vocal ability.
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Alexei Cherniy is 17 years old. He was in his last year at high school when he got sick with myelodisplastic syndrome (refractory anemia with excess blasts RAEB-1). In February 2009, Alexei came to St. Petersburg from Omsk, his native Siberian city, and the test results showed that his illness is progressing and transforming into acute leukemia (M6 version). Alexei needed bone marrow transplantation, and, fortunately, a donor for him was found in Germany. His relatives raised 5,000 Euros, but the rest of the money (10,000 Euros for the collection of transplant and 2,500 Euros for the delivery) has to be collected as soon as possible, because Alexei’s remission is unstable.
Jul 10, 2009: Alesha underwent bone marrow transplantation. However, he still owes donor registry 10,000 euros.
Jul 21, 2009: Thanks to donation from Beltel Worldwide, we transferred 7,250 euros to the bone marrow donor registry.
Sep 10, 2009: Alesha successfully recovered after transplantation and the doctors allowed him to go home to Omsk for a month.
Oct 15, 2009: Alesha and his mom came to St. Petersburg for control tests.
Oct 23, 2009: Latest tests confirmed the remission. Alesha has no “graft-versus-host” reaction and feels and looks good. The tests however revealed an aspegillosis and Alesha has been prescribed a 400mc/day dose of Vfend. The boy had already left for home in Omsk, but scheduled to come back to St. Petersburg for testing in a month.
Jan 15, 2010: “On January 19th, we will come to the clinic for another round of tests. Alesha feels well and was taken off Vfend therapy for now.”
- Alesha’s mom
Feb 04, 2010: Aleksey underwent testing and he is doing well. Based on puncture results, donor’s bone marrow engrafted fully. He previously had heightened transaminase, but after he was prescribed liver protecting medications, the counts normalized. Aleksey is currently taking only Biseptol.
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Hudoidod Yazonov came to St. Petersburg with his family from Tajikistan. On April 1, 2009 Hudoidod’s throat started to hurt, and an ambulance took him to Children’s hospital No.1, where he was diagnosed with acute leukemia. He has a brother, Islomidin, who is 4, and a sister Oisha, who is 17. The family struggles to earn living. Hudoidod’s father works in farming for a few weeks in summer, and that is all the income they get in a year. Meanwhile, as a non-citizen of Russia, Hudoidod is billed the full cost of his treatment, which amounts to several thousand dollars a month. Let’s allow Hudoidod receive medical treatment he vitally needs!
Jun 03, 2009: Hudoidod is scheduled for the transfer to the chemotherapy department. Hudoidod’s mother, Zulfiya, is grateful to Advita contributors for supporting her son.
Aug 23, 2009: Hudoidod turns 8 years old on August 15th. The volunteers of the Internet forum “St. Petersburg Club of Parents” will be distributing gifts for Hudoidod. The treatment goes according to plan. Unfortunately, contributions for Hudoidod get barely collected.
Oct 02, 2009: Hudoidod is close to completing the main treatment course that will last another month. He feels well.
Nov 06, 2009: Hudoidod is completing the main treatment by November 10th. He will be undergoing supportive therapy in Dushanbe, his home city. With the help of our colleagues from the Foundation “Give Life”, the Atlant Soyuz airline provided Hudoidod’s family free tickets from Moscow to Dushanbe. We now need to raise money for the train tickets to Moscow and supporting medications. Hudoidod’s family remains in a dire financial situation, and will not handle expenses on their own.
Nov 30, 2009: Hudoidod returned to Tajikistan. During the next year and a half, he will have to take mercaptopurine and dexamthasone, weekly intramuscular injections of methotrexate and intravenous injections of vincristine every six weeks. The total cost of medications is approximately 8,000 Somoni or $1,800. After great efforts have been made to treat Hydoidod in St. Petersburg, the Ministry of Health of Tajikistan took over the responsiblitiy to look after the boy at home. In advance of Hudoidod’s return, Sherali Rakhmatullayev, Acting Chief, Department of Medical Services Ministry of Health of Tajikistan, said in an interview with an agency Asia-Plus: “We can give 100% guarantee that this child will not be left without care and attention. Once he arrives, we will send him to the senior specialist [hematologist-oncologist]. We do not foresee any disruptions in the boy’s treatment”. The Ministry of Tajikistan agreed to provide 3,000 Somoni to cover Hudoidod’s treatment till the end of 2009 and will be allocating the remaining amount in 2010. Full text of the interview with Asia-Plus can be found here.
