Daniil Bushkovskiy
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Daniil Bushkovskiy
Daniil is 19 years old, he lives in a small Siberian village in Tomsk Region.

The young man is a bright student, he reads a lot, learns to play guitar. Life could be happy, but unfortunately Daniil has a rear and life threatening diagnose – primary immune deficiency, chronic granulomatous disease (CGD)

From early childhood the boy suffered from purulent inflammations, constant pain in the stomach, later also lungs were affected. The child was unsuccessfully treated for various alleged diseases and only at the age of 17 he was correctly diagnosed at the Dmitriy Rogachev Medical Center in Moscow. This made it possible to prescribe adequate therapy, but it only helps to cope with the consequences without eliminating the cause.

CGD is a genetic disease that causes primary immunodeficiency. The inability of phagocytic cells to destroy the resulting infection causes prolonged illness and often death from pneumonia, abscesses, sepsis and fungal infections. Bone marrow transplantation is an effective, and sometimes the only way to combat the disease, it allows to radically change the quality of life of the patient.

The transplantion can be made at the Raisa Gorbacheva Institute of Pediatric Oncology in St. Petersburg. Daniil has a compatible donor only abroad. For the search for a donor, stem cell sampling in the German S. Morsch Registry and delivery of the transplant to St. Petersburg a sum of about 16 000 Euro is needed. A family will never be able raise that kind of money. Daniil holds on and hopes to recover.
18.12.2019
Daniil is well and is now back home. His hemoglobin levels are a bit low, though other blood counts are close to normal. Daniel continues to take Tacrolimus. A medical appointment is scheduled in St. Petersburg for February 2020. Daniel goes for walks, spends time at home while also preparing documents to reapply for disability benefits.

29.11.2019
The blood test results show that complete engraftment of the donor bone marrow remains. Blood counts are close to normal and there are no viruses detected. Skin GHVD does not bother Daniel, although he keeps taking Tacrolimus. Daniel is soon to be released and on December 6th he returns home. Daniel is well, goes for walks and is in physical therapy. He has managed to gain some weight.

12.11.2019
Daniel's blood test showed complete engraftment of the donor bone marrow. Blood counts are close to normal. The young man was transferred to the day hospital of Raisa Gorbacheva Institute of Pediatric Oncology. He recently developed a skin rash and is to have a dermatologist consultation. Daniil keeps taking Tacrolimus. Daniel feels rather well and is more energetic. The young man goes for walks and spends time on his computer.

22.10.2019
In early October, Daniil had a fever and was later diagnosed with a catheter infection and cervical lymph node caused by Pseudomonas aeruginosa. Daniil was transferred to an intensive care unit where they surgically removed the abscess. Mid-October, after the necessary treatment Daniil returned to the transplantation unit. The blood test taken 30 days after the surgery showed complete engraftment of the donor bone marrow. His blood counts are close to normal now, so he will be transferred to a day hospital soon.
Daniil is well, although a bit weak. He is allowed for walks and is doing physical therapy. In his free time, he learns card tricks.

01.10.2019

On September 18th, Daniil had a bone marrow transplant. After the surgery, he kept experiencing seizures and had to take anti-seizure medication. Three days after the transplant, he was taken to a transplant unit. His blood counts are low, for which is getting blood transfusion. Unfortunately, Daniil has also developed mucositis.
During the preparation period, Daniil was successfully treated for furunculosis, but has been suffering from a high fever in the last 5 days. Doctors believe that the fever might have been caused by an infection. At the moment, Danill is very weak and is not feeling well. He might need further treatment.
The search for a bone marrow transplant donor and stem cell matching were fully covered by our donors. We are grateful for the generous donations!

11.09.2019

On September 9th, Daniil was admitted to the intensive care unit of Raisa Gorbacheva Institute of Pediatric Oncology due to a possible acute reaction to the upcoming pre-transplantation chemotherapy. His transplantation is scheduled for September 18th.
Lately, Daniil has been suffering from furunculosis and an eye inflammation and was diagnosed with staphylococcus. From time to time, Daniil is experiencing high fever, although his general condition is stable and his appetite is increasing.

23.08.2019
Daniil is undergoing a medical examination in Tomsk prior to the surgery. His blood values are stable, ESR is high. Daniil is still suffering from furunculosis and decreased appetite.
Tomorrow Daniil is returning home to go to St. Petersburg at the end of August for medical advice. Daniil's not feeling well because of
a high fever and furunculosis.
Lilya Znayeva
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Lilya Znayeva
Lilya Znayeva, 33, lives in Irkutsk. After graduation she worked in the Federal Bailiffs Service and as a lawyer. Lilya is married and has two sons.

Before the illness, Lilya had an interesting and active life — vacations on the Baikal Lake, hiking and kayaking. Julia made big plans, but the diagnosis of acute lymphoblastic leukemia, made in the Summer of 2017, changed her whole life: eight months in the hematology department, six courses of chemotherapy, then three supporting courses. And in June 2018 — a new relapse and endless exhausting treatment. It became clear that the only way out is a bone marrow transplantation.

Lilya was referred for a consultation to Raisa Gorbacheva Memorial Institute
of Children's Oncology, Hematology and Transplantation in St. Petersburg. According to the tests, there were no matching donors in the Russian register, so the search for potentially compatible unrelated donors in international databases began.

The German registry invoiced 18000 euros for the search and activation of the donor. With the help of friends, colleagues and acquaintances, the entire amount was raised, and the first installment paid. However, it turned out that a compatible donor was found only in the UK, which means that the additional sum of 12500 euros has to be raised, and the transplantation is already scheduled for July 21.

The deadline for raising funds is very short, and the amount is too large — Lilya and her family cannot manage it on their own. Lilya writes in her appeal: "I have to ask you for help: please give me a chance for a healthy and happy life. I want to raise my children myself!"
31.01.2020
On November 24, Lilia went to St. Petersburg for a check-up: remission remains and her blood counts are stable. Sirolimus treatment is over and Liliya was allowed to go home until February. She is well, busy with her apartment renovations and taking care of the children.

22.11.2019
November 19th, results of Lilya's biopsy show that remission remains. Her platelet count is low, while other blood counts are close to normal. So far, the state failed to provide Sirolimus for Liliya. November 24th, she will go to St. Petersburg for a check-up.
Liliya is well, she plays with her children and reads books to them. Not long ago, she was re-registered as disabled (first-degree).

24.10.19
Lilya's blood counts are increasing. She is taking Sirolimus, Imatinib and other medications. Her follow-up examination is scheduled for November 25th. Meanwhile, Lilya has to reapply for disability benefits. She is feeling better and at the moment at home with her children.

03.10.19
In the middle of September, Lilya had a bone marrow biopsy that showed full engraftment of the bone marrow transplant. Lilya's blood blast count is within the norm and although her blood counts are lower than usual, there is no need in blood transfusion. Lilya was discharged from the hospital, the follow-up checkup is scheduled for early December. Lilya is well and is already back home, happily reunited with her kids.

09.09.2019
Marrow biopsy in August has shown successful transplant bone marrow engraftment. CMV disease and herpes are no longer an issue, but Lilya is still struggling with low blood counts and thus requires a blood transfusion. Lilya is also through with her Valcyte treatment. Lilya is doing well and is allowed for walks, but can't wait to finally go home.

19.08.2019
On August 2nd, Lilya was transferred to a day clinic of the Raissa-Gorbatschowa Institute for Pediatric Oncology, Hematology and Transplantology in St. Petersburg. The second puncture after the transplantation was taken today, the result is not ready yet. Blood values continue to rise. The Valcyte therapy is still in progress and the infections are almost controlled. Lilya feels good, she walks a lot, but sometimes she suffers from nausea.

30.07.2019
July 26th, on the 35th day after the transplantation, Lilya had her control puncture. The donor's bone marrow has engrafted successfully, and it works. Lilya's blood count is rising, no more transfusions are required. She has recovered from the mucositis. Since Lilya's temperature rapidly increased two weeks ago, she underwent an examination. As a result, cytomegalovirus infection and herpes virus were detected. Lilya is now being treated, and her temperature went back to normal. Her antibiotic and antiviral medication treatment continues.
Lilya feels well, she goes for walks, does physical therapy exercises and attends classes like dancing and toys sewing in the hospital.

09.07.2019
On June 21, Lilya underwent a bone marrow transplantation. Her blood count has recently begun to rise. Because of low blood count, strong mucositis and cystitis have developed. Lilya is not feeling well, she is getting painkillers.

17.06.2019
Lilya was hospitalized at the Raisa Gorbacheva Memorial Institute
of Children's Oncology, Hematology and Transplantation in St. Petersburg. She is undergoing a pretransplantation chemotherapy. A bone marrow transplantation is scheduled for June 21st.
Blood counts are now declining. According to the results of puncture, Lilya is in remission.
Lilya feels well enough to occupy herself at the hospital with anti-stress coloring books and puzzles.

07.06.2019
Lilya transferred 16000 Euro to the International S. Morsch register. 8594 Euro still need to be raised to fully pay for the search. Lilya warmly thanks everyone who helps her.

Julia Mysova
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Julia Mysova
Julia Mysova lives in Satka in Chelyabinsk Region. Thirty years old, Julia is married with three children. In March 2017, she was diagnosed with acute monoblastic leukemia.

Julia underwent chemotherapy twice during her last pregnancy. Luckily, her baby was born healthy, and Julia is currently in remission. The doctors at the Raisa Gorbachev Memorial Research Center in St. Petersburg are convinced, however, that the risk of a recurrence is quite high without a bone marrow transplant.

The search for a bone marrow donor in Russia proved fruitless. It took a huge effort, but Julia's family and friends raised the 6,000 euros required to launch a search for a compatible donor in the international registry. Since the total cost of the search, is 18,000 euros, however, Julia's family will need help from concerned outsiders. Their income is too low.

Julia dreams of living a long life with her loved ones and raising her children.

"Any help you can give me is a chance I will get well. I thank everyone who has shown their concern for me" she writes.


02.10.2019
In October, Yulia is going to Chelyabinsk for a medical follow-up checkup. Her blood counts are slightly lower than usual. For now, it was decided against a bone marrow transplant given some of physiological factors and the fact that Yulia has been in remission for quite some time. Yullia had an URTI for two weeks and was getting treatment for that. She is feeling better, but feels quite weak and experiences some sleeping difficulties. She is busy with household chores and takes care of the kids.

20.08.2019
Julia feels quite well, she is only bothered by general weakness. Her blood counts are a little low. The control test will take place in Chelyabinsk at the beginning of October. Julia is now at home and will soon go to the village with her children.

24.07.2019
According to the results of the July puncture, Julia is still in remission, and her blood blasts remain within the norms (4%). Her blood count is also normal. The next examination will take place in October. For now, Julia is at home and feels quite well. Together with her husband, she is busy with the renovation and has recently spent three days at the lake with her children.

04.07.2019
Julia feels rather well, but she is now staying at home with the children - they have a virus infection. The next control puncture in Chelyabinsk is scheduled for 11th of July. Blood counts are close to normal.

11.06.2019
Julia is at home, at the end of June she plans to have a control blood test. Regarding the date of bone marrow transplantation, the decision will be made no earlier than the end of Summer.
Julia feels good, she spends time with her children.

16.05.2019
Julia came to St. Petersburg on April 29. Remission is confirmed, blood indexes are normal. Supporting chemotherapy is canceled, now she only needs to have regularly blood tests in Chelyabinsk.
Bone marrow transplantation is scheduled for autumn.
Julia is at home, she feels rather well.

10.04.2019
Julia returned home on April 1 after a course of chemotherapy. Soon she developed candidiasis of the mouth and esophagus, so strong that it was impossible to eat, even to drink was painful. Blood indexes have declined. The next course of chemotherapy is scheduled for April 29th.
Now Julia is already feeling better, she can eat.

19.03.2019
On February 21 Julia was discharged from the hospital. She is now at home, on March 25 she will have to undergo another hospitalization in Chelyabinsk. A bone marrow donor for Yulia was found, the date of transplantation has not yet been appointed.
Julia feels unwell, this month she suffered from intestinal infection, and her stomach pains still disturb her.

18.02.2019
On February 14, Julia was hospitalized in a Chelyabinsk hospital, she is undergoing chemotherapy.
There are no headaches now, they usually start after completion of the treatment course. Blood indexes have risen since the last course.
Julia feels rather well, watches video and reads. From recent reading, she liked the novel "Sister Carrie".

Mikhail Dugin
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Mikhail Dugin
Mikhail Dugin, 32, lives in Volzhsky in Volgograd Region. It was a real shock to Mikhail when he was diagnosed with acute lymphoblastic leukemia. His life changed dramatically. Mikhail did not give up, however, and his disease soon went into remission.

In 2018, the illness returned. Mikhail's doctors at the Raisa Gorbachev Memorial Research Institute said he had to undergo a bone marrow transplant. No compatible donor was found in the nationwide Russian database.

A search for a donor in the international registry costs 18,000 euros. Relatives and friends managed to raise the initial payment of 6,000 euros.

Mikhail asks for your help in raising the remaining 12,000 euros, since his only source of income is a modest disability pension.

"Please help me return to a normal, happy life. Living is such a joy" Mikhail writes.
22.10.2019
Once a week, Mikhail has to take blood tests at his local hospital. His blood counts are normal. The follow-up check-up is planned for the end of January 2020. Mikhail is well and spends time with his friends.

02.10.2019
Mikhail is doing well. At the end of September, he had a follow-up checkup at the Raisa Gorbacheva Institute of Pediatric Oncology and the puncture showed full engraftment of bone marrow transplant. His blood counts are normal.
Starting October 4th, Mikhail is going to be receiving outpatient care. Mikhail has a friend in St. Petersburg that he regularly talks to, and at the end of the week he is hoping to be able to fly home.

06.09.2019
Michael is currently recovering at home. Once a week, he has to take a blood test — his blood counts are stable. The follow-up exam is postponed till the end of the month. Sirolimus treatment is completed. Michael is doing well and goes for walks in the evenings when it is not too hot.

16.08.2019
Mikhail feels pretty good. His blood counts continue to rise. On August 23rd, Michail will stop taking Syrolimus as planned. He is at home, keeps in touch with his friends, goes for a walk and, if possible, goes to the countryside.

26.07.2019
Mikhail was discharged today. According to the results of the July puncture, he is still in remission, and the donor's bone marrow works well. Although his blood count is rising, it is still below the norm. The dosage of Sirolimus has been reduced, and soon the drug will be canceled. Mikhail has recovered from the cytomegalovirus infection. He feels okay and plans to go home. In one and a half months, he has to return to St. Petersburg for the follow-upexamination.

05.07.2019
In June, Mikhail was referred to a day clinic; on July 3, he had a control puncture, the results are not yet ready. According to the results of the last puncture, the donor bone marrow has taken completely. The Rh factor was replaced by a donor Rh, and blood counts are rather low, possibly because of the long-term treatment of cytomegalovirus infection. Mikhail continues to take Sirolimus, and Valcyte was recently canceled.
He feels rather well, only complains about weakness.

10.06.2019
Mikhail is feeling pretty good. The puncture a week ago showed remission, the minimal residual disease is not identified, and the result of the bone marrow engraftment test isn't ready yet.
The platelets are low and do not grow; other blood counts are close to normal. Doctors suggested that platelets do not grow not only because of cytomegalovirus infection (treatment with Cymevene continues), but also because of the toxicity of the immunosuppressive medication, therefore, Tacrolimus was recently replaced by Sirolimus.
Mikhail feels rather well, he tolerates the heat normally — he is used to Southern climate.

20.05.2019
On April 10th, Mikhail underwent bone marrow transplantation; on May 6th, he was referred to a day hospital. According to the results of puncture, the donor bone marrow has taken and it works. Recently Mikhail has been infected with cytomegalovirus, and appropriate treatment is being carried out now. Due to this infection, his recently normalized blood readings decreased. Misha is not feeling very well, he complains about his weakness.

05.04.2019
Mikhail came to St. Petersburg, where he was hospitalized on April 2nd. He feels well. The puncture has shown full remission, his blood readings are normal.

18.03.2019
Mikhail is engaged in organizing government quota for his medical treatment and passes pre-transplantation tests in his hometown. Next week he will fly to St. Petersburg, where his bone marrow transplantation is scheduled for April 10th. Misha feels rather well.

25.02.2019

A donor for Mikhail is found, and his bone marrow transplantation is scheduled for April. He is currently undergoing the first course of supporting chemotherapy, and the treatment is well tolerated.


In memory of Mikhail Volkodav
Updates
Mikhail Volkodav
Unfortunately, Mikhail died 25.08.2019 in the Intensive Care Unit. After the first transplantation, the bone marrow did not take, and the second operation Mikhail did not endure. We express our sincere sympathy to his relatives and friends.

_______________________

Mikhail Volkodav is 24 years old. He lives in the small town of Shakhty in Rostov Region in the South of Russia. In February 2017, Mikhail was diagnosed with leukemia at the Raisa Gorbacheva Oncology Center.

Bone marrow transplantation is the only effective treatment in such cases. Unfortunately, no compatible donors were found in Russia. It costs 18,000 euros to find potential donors abroad.

Mikhail's parents are elderly, and the family does not have the means to raise such a large sum of money. Nevertheless, relatives managed to find 6,000 euros for the first payment to the Stefan Morsch Registry in Germany.

Mikhail wants to get over his illness and return to a normal life.
16.08.2019
On August 12, Mikhail was transferred to the intensive care unit of the Raisa Gorbacheva Research Institute in critical condition: the infection caused pulmonary edema. Mikhail is now connected to an IVL machine, in an induced coma. The results of the bronchoscopy are not yet ready.

26.07.2019
Mikhail was hospitalized at the Raisa Gorbacheva Research Institute. On July 24, he underwent a second bone marrow transplant. His blood counts are falling. Hemocomponent transfusions are being performed. Mikhail feels rather well, although he experiences nausea and decreased appetite. When he has a moment, he reads and watches movies. Tepadin bills were paid in time — we heartily thank the donors who made it possible.