Children

During its lifetime the Sunflower Fund managed to help and support hundreds of babies thanks to financial assistance of many companies and simple people of different trades, ages and social status. Every day they find time to make a contribution in organizing versatile kinds of help to children in need. Yet there is still a great deal of work ahead of us, a fight for health and smiles of our children!

They need your help

Monitoring viruses by PCR

Department of Clinical Immunology at the Russian Children’s Clinical Hospital (RCCH)

Monitoring viruses by PCR

Department of Clinical Immunology at the Russian Children’s Clinical Hospital (RCCH)
Young patients of the Department of Clinical Immunology at the RCCH need a regular screening of viral infections by PCR (the most sensitive method for this purpose). Tests are done in the Laboratory of Molecular Biology at the FRCC-PHOI hospital for a fee. 100.000 rubles are needed monthly to conduct the tests. The obtained results allow doctors to modify therapy quickly in patients with borderline amount of virus particles in the blood.
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Gugolko Egor

1 year old, Kurgan region

Gugolko Egor

1 year old, Kurgan region
Diagnosis: primary immunodeficiency, chronic granulomatous disease
Necessary drugs - Vifend and Tavanic cost 51 500 rub.
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KLYUKIN NAZAR

1 year, Crimea Republic, Evpatoria

KLYUKIN NAZAR

1 year, Crimea Republic, Evpatoria
Diagnosis: primary immunodeficiency, Wiskott-Aldrich syndrome
Required: Nplate medicine 250 mcg № 1 - 2 packages, cost - 126 000 rub.
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Genetic analysis

Genetic analysis

Blood samples from regional hospitals come to Dmitry Rogachev Federal Research Centerof Pediatric Hematology, Oncology and Immunology for the genetic confirmation of Primary immunodeficiencydiagnosis. The genetic analysis makes it possible not only to determine the prognosis of the particular patient's disease , but also to select the most appropriate treatment. Such tests are not carried out in the regional hospitals. They are neither financed by the compulsory health insurance , nor by other public funds.Genetic analysis is the first necessary step towards an accurate diagnosis, good treatment and the victory over the disease.
The cost of the analysis varies from 6000 to 30 000 rubles. On the average, the fund pays for the 10 children's tests during one month.
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You helped them

Heartfelt thanks to all those who helped the children. Together, we raise money for the difficult and prolonged courses of treatment. Read parent`s thank you letters and the stories of children you helped.

Daniil Cherney

3 years old, Tver

Daniil Cherney

3 years old, Tver
Diagnosis: Primary immunodeficiency. Autoimmune lymphoproliferative syndrome (ALPS).
Autoimmune lymphoproliferative syndrome means that there are over 50,000 aggressive lymphocytes in the blood of Daniil, attacking different organs of his body. With such a diagnosis there is a high risk of malignancies, in order to avoid them the boy needs a pack of Sirolimus 1 mg x 100. The price is 950 euros. Therapy with this drug is durable, one pack is enough for 4 months. Thanks to private donations made by kind-hearted persons, the drug has been purchased.

Kseniya Vanina

9 years old, the Lipetsk Region

Kseniya Vanina

9 years old, the Lipetsk Region
Diagnosis: Primary immunodeficiency. Louis–Bar syndrome.
Thanks to private donations and the “Teva” company, which organized charity action “Right on target”, 2 packs of Posaconazole were purchased for a total amount of 84,000 rubles.

Kostya Kurilo

4 years old, Murmansk

Kostya Kurilo

4 years old, Murmansk
Diagnosis: Primary immunodeficiency (Nijmegen syndrome).
Bone marrow transplantation and introduction of stem cells from the umbilical cord blood of a sibling are the only 2 ways to cure Kostya. Fortunately, the boy had a sister being born most recently. At her birth, the required amount of umbilical cord blood was taken for a possible treatment of the boy. Thanks to the “Teva” company, which organized charity action “Right on target”, 52,870 rubles were raised in order to pay for allocation of concentrate of the stem cells harvested from the umbilical cord blood, testing the concentrate for the presence of infectious agents (bacterial and viral), typing, and long-term cryogenic preservation.

Oleg Lazutkin

9 years old, the Bryansk Region

Oleg Lazutkin

9 years old, the Bryansk Region
Diagnosis: Juvenile dermatomyositis.
Thanks to the “Teva” company, which organized charity action “Right on target”, 1 pack of Adalimumab was purchased (the cost of the drug was 76,000 rubles).

Albert Gazeev

11 years old, Zelenodolsk

Albert Gazeev

11 years old, Zelenodolsk
Diagnosis: Juvenile rheumatoid arthritis (systemic-onset).
Thanks to Alexander Nikolashin (a private donor) and the “Teva” company, which organized charity action “Right on target”, life-saving drug Canakinumab 180 mg was purchased. The cost was 290,608.06 rubles.

Ivan Bokov

6 years old, Nizhny Novgorod

Ivan Bokov

6 years old, Nizhny Novgorod
Diagnosis: Juvenile rheumatoid arthritis (systemic-onset).
Thanks to Alexander Nikolashin (a private donor) and the “Teva” company, which organized charity action “Right on target”, 1 pack of life-saving Canakinumab 180 mg was purchased for an amount of 290,608.06 rubles.

Polina Trushina

11 years old, the Moscow Region

Polina Trushina

11 years old, the Moscow Region
Diagnosis: Juvenile rheumatoid arthritis. Rheumatoid uveitis (severe course, secondary glaucoma has developed).
Thanks to Vladimir Chubar (a private donor) and the “Teva” company, which organized charity action “Right on target”, 4 doses of Golimumab 50 mg were purchased for a total amount of 158,600 rubles.

Sasha Shirokov

11 years old, Ufa

Sasha Shirokov

11 years old, Ufa
Diagnosis: Primary immunodeficiency. Chronic granulomatous disease.
Thanks to the “Teva” company, which organized charity action “Right on target”, 4 packs of Vfend 200 mg x14 (a 1-month supply of the drug for Sasha) were purchased for a total amount of 99,600 rubles.

Rolan Bagaev

4 years old, Ufa

Rolan Bagaev

4 years old, Ufa
Diagnosis: Primary immunodeficiency. X-linked agammaglobulinemia (Bruton's disease).
Thanks to people who care and the “Teva” company, which organized charity action “Right on target”, 2 packs of life-saving Immunoglobulin 10 % 50 ml were purchased. The overall cost was 40,400 rubles.

Misha Kurochkin

16 years old, Vladimir

Misha Kurochkin

16 years old, Vladimir
Diagnosis: Primary immunodeficiency. Chronic granulomatous disease.
2 packs of Taurolock Hep 100, 10 x 3 ml were purchased for a total amount of 9,900 rubles.

Maksim Baturin

8 years old, Severodvinsk (the Arkhangelsk Region)

Maksim Baturin

8 years old, Severodvinsk (the Arkhangelsk Region)
Diagnosis: Primary immunodeficiency. Louis–Bar syndrome.
30 packs of Enoxaparin sodium 20 mg / 0.2 ml (a 1-month supply of the drug for Maksim) were purchased for a total amount of 11,340 rubles.

Valya Tsyvkina

13 years old, Vladivostok

Valya Tsyvkina

13 years old, Vladivostok
Diagnosis: Juvenile rheumatoid arthritis, joint-affecting form. Anemia of mixed origin. Steroid-induced diabetes. Congenital heart disease. Primary immunodeficiency. Common variable immunodeficiency (CVID).
Thanks to the “Teva” company, which carried out charity event “Right on target”, 4 packs of anti-inflammatory drug Tocilizumab were purchased for a total amount of 115,200 rubles.

Dzhavid Abdullaev

14 years old, Zhukovskiy (the Moscow Region)

Dzhavid Abdullaev

14 years old, Zhukovskiy (the Moscow Region)
Diagnosis: Primary immunodeficiency. Chronic granulomatous disease.
Thanks to the “Teva” company, which organized charity action “Right on target”, 138,520 rubles were raised. The money were spent on the following life-saving drugs: Itraconazole – 3 packs, Levofloxacin – 6 packs, Actovegin – 2 packs, Vfend – 5 packs.

Alexey Grishin

12 years old, Moscow

Alexey Grishin

12 years old, Moscow
Diagnosis: Primary immunodeficiency. Chronic granulomatous disease.
Thanks to the “Teva” company, which organized charity action “Right on target”, and ESN Group, regular partner of the Fund, 353,600 rubles were raised. The money were spent on purchasing 40 vials of life-saving Amphotericin B. Many thanks to everyone who participated!

Olesya Kurenkova

14 years old, Moscow

Olesya Kurenkova

14 years old, Moscow
Diagnosis: Primary immunodeficiency. Hereditary angioedema.
5 doses of the “Icatibant” drug were purchased for a total amount of 495,000 rubles (269,547.89 of them were raised by the readers of the “Metro” newspaper, and the rest of the sum - 225,452.11 - was donated by the staff of the “Red Media” and "TEZ TOUR" companies, as well as by not indifferent individuals, who decided to participate in the life of Olesya. Thanks everyone!

Timur Zhilhaydarov

1 year old, Omsk

Timur Zhilhaydarov

1 year old, Omsk
Diagnosis: Primary immunodeficiency: LAD1 (leukocyte adhesion deficiency).
On April 25, a bone marrow transplantation was performed on Timur. He is in a post-transplantation period now, which requires constant medical supervision. Nosocomial infections are a hazard to the kid, therefore Timur and his mother have moved to the Fund’s outpatient apartment. The rent is 35,000 rubles a month. Thanks to the “Teva” company, which organized charity action “Right on target”, the apartment rent was paid, and also 1 pack of needles for a port system was purchased (the cost was 3,766 rubles).

Molecular genetic testing

The tests include prenatal diagnosing and a search for mutations in genes.

Molecular genetic testing

The tests include prenatal diagnosing and a search for mutations in genes.
Owing to the participants of the charity event “Vitamins Picnic in the Gorky Park”, 80,000 rubles were raised. The fund settled the bill for molecular genetic testing of the following kids: Dima Manashevskiy, Matvey Vasin, Dzhamaludin Kurkiev, and Timofey Kutukov. The overall cost of the tests carried out was 68,400 rubles. The remaining 11,600 rubles will be spent on molecular genetic testing of other children, which will be carried out in the nearest future.

On average we cover expenses for these kinds of tests for 3-5 children a month. Depending on the number of children examined and complexity of the tests, the total costs are 50,000 - 100,000 rubles a month.

Rodion Togulev

8 years old, Kazan

Rodion Togulev

8 years old, Kazan
Diagnosis: Primary immunodeficiency, Wiskott-Aldrich syndrome. The boy has developed acute lymphoblastic leukemia as a complication of gene therapy. Post-bone marrow transplantation period.
6,000,000 rubles were raised on a Charitable Christmas Eve “Action! 2012” for the transplantation to be carried out in Hauner Children’s Hospital (Germany).
But now, after the transplantation, the Rodion’s family desperately needs financial aid – 250 euros a month - for food and necessary hygiene products. Thanks to the “Teva” company, which organized charity action “Right on target”, Rodion’s family received financial assistance in the amount of 10,000 rubles.

Sergey Tarasov

13 years old, Chelyabinsk

Sergey Tarasov

13 years old, Chelyabinsk
Diagnosis: Chronic immune thrombocytopenia. Primary immunodeficiency (undefined type).
Thanks to the “Teva” company, which organized charity action “Right on target”, 1 pack of life-saving Sirolimus drug was purchased for an amount of 45,000 rubles.

Dinara Nostaeva

15 years old, the Republic of Kalmykia

Dinara Nostaeva

15 years old, the Republic of Kalmykia
Diagnosis: Castleman's disease (hyaline vascular type).
For continuous monitoring of blood sugar levels, the following items were purchased: 1 pack of lancets and 5 packs of glucometer test strips. The total cost was 4,900 rubles.

Ilya Alikin

17 years old, Perm

Ilya Alikin

17 years old, Perm
Diagnosis: Primary immunodeficiency. X-linked agammaglobulinemia.
4 packs of life-saving Immunoglobulin human normal 50 ml 10% were purchased for a replacement therapy. The total cost was 80,080 rubles.

Aykanat Adakaev

8 years old, the Republic of Altai

Aykanat Adakaev

8 years old, the Republic of Altai
Diagnosis: Primary immunodeficiency. Hyper IgM Syndrome.
After the repeated transplantation of bone marrow, graft versus host disease has followed.
A 2-month rent of the outpatient apartment was paid. The total cost was 70,000 rubles.

Mariam Gezalova

5 years old, Moscow

Mariam Gezalova

5 years old, Moscow
Diagnosis: Primary immunodeficiency, interleukin-12 receptor deficiency.
Thanks to the readers of the “Metro” newspaper, 77,417.48 rubles were raised. 64,200 rubles were spent for the purchase of Interferon gamma (a 2-month supply was provided). The rest of the funds (13,217.48) will be spent on the treatment of Misha Kurochkin.

Asiyat Shugusheva

16 years old, Republic of Kabardino-Balkaria

Asiyat Shugusheva

16 years old, Republic of Kabardino-Balkaria
Diagnosis: Primary immunodeficiency. CVID.
9 packs of Vfend 50 mg x14 and 1 pack of Tobramycin (a 1-month supply) were purchased for a total amount of 169,400 rubles. Many thanks to the Russian Club of Luxembourg for paying for the life-saving drugs.

Roma Antonov

5 years old, the Murmansk Region

Roma Antonov

5 years old, the Murmansk Region
Diagnosis: Juvenile rheumatoid arthritis.
The service of a round-the-clock nanny for the period from the 2nd to the 17th of April while Roma was staying at the hospital was paid. The cost was 18,965 rubles.
We want to express our deep gratitude to the staff of the Bazelevs Production company, as well as to all the caring people who helped to pay for the babysitting service and provided Roma with all necessary clothing and food.

Misha Volkov

2 years old, the Chelyabinsk Region

Misha Volkov

2 years old, the Chelyabinsk Region
Diagnosis: Primary immunodeficiency. Chronic granulomatous disease.
A 2-month supply of Itraconazole (2 vials x 150 mg) was provided at the cost of 7,600 rubles.

Ilya Kopylov

17 years old, Yekaterinburg

Ilya Kopylov

17 years old, Yekaterinburg
Diagnosis: Primary immunodeficiency. X-linked agammaglobulinemia (B-cell deficiency).
22 vials of life-saving Human normal immunoglobulin 10% [50 ml] were purchased for a total amount of 480,392 rubles (of which 110,737 rubles were donated by the readers of the "Metro" newspaper and 369,655 rubles were donated by the Russian Club of Luxembourg). Thanks everyone who participated! Ilya has already started taking the medication, and we hope for a rapid improvement in his health!

Shamil Dzhemiev

9 years old, the Kurush village (the Republic of Dagestan)

Shamil Dzhemiev

9 years old, the Kurush village (the Republic of Dagestan)
Diagnossis: Primary immunodeficiency with inborn errors of IL12- and IFN-γ-mediated immunity.
Generalized mycobacterial infection with multiple bone lesions.
Council of physicians of the Federal Research and Clinical Center of Pediatric Hematology, Oncology and Immunology (FRCC-PHOI) administered Interferon as the only life-saving treatment to the boy. The drug is not registered in the Russian Federation. Its cost is 900 euros per pack (a new pack is needed every 3 weeks).
The medicine has to be provided on an ongoing basis!
A supply of Interferon for a 6-month course of treatment was purchased. The total cost was 8,404.24 euros.

Alexander Prokhorov

11 years old, Troitsk (the Moscow Region)

Alexander Prokhorov

11 years old, Troitsk (the Moscow Region)
Diagnosis: Juvenile rheumatoid arthritis.
Durolane 60 mg / 3 ml (1 ampin) was purchased for 14,090 rubles.

Diana Tuezova

7 years old, Krasnodar

Diana Tuezova

7 years old, Krasnodar
Diagnosis: Combined primary immunodeficiency: Comel-Netherton syndrome.
8 vials of Omalizumab 150 mg (a 2-month supply) was purchased for an amount of 180,000 rubles.

Nikita Gurulev

6 years old, the Vladimir Region

Nikita Gurulev

6 years old, the Vladimir Region
Diagnosis: Primary immunodeficiency. Hyper IgM syndrome.
Pegfilgrastim (a supply for a 1-month course of treatment) was purchased for an amount of 52,500 rubles.

Vakha Timirgiriev

1.5 years old, the Volgograd Region

Vakha Timirgiriev

1.5 years old, the Volgograd Region
Diagnosis: Primary immunodeficiency, severe combined immune deficiency (SCID). The boy underwent bone marrow transplantation recently.
Posaconazole, Valaciclovir, and Ursodeoxycholic acid are the medicines which are needed constantly.
The cost of a 1-month course of treatment is $1,900.

Andrey Davidyuk

12 years old, Velikiy Novgorod

Andrey Davidyuk

12 years old, Velikiy Novgorod
Diagnosis: Primary immunodeficiency. Hyper IgM syndrome.
Pegfilgrastim was purchased for 60,200 rubles.

Sergei Boriskin

2 years and 9 months old, Moscow

Sergei Boriskin

2 years and 9 months old, Moscow
Diagnosis: Primary immunodeficiency, familial cold autoinflammatory syndrome (FCAS).
Thanks to NBC Universal and singer Nyusha with her friendly team, 82,500 rubles for the complete Voight therapy treatment course were paid.

Nikita Yermolaev

8 years old, Astrakhan

Nikita Yermolaev

8 years old, Astrakhan
Diagnosis: primary immunodeficiency, autoimmune lymphoproliferative syndrome (ALPS), autoimmune thrombocytopenia.
2 packs of Mycophenolate mofetil at the total cost of 9,580 rubles were purchased for Nikita.

Elina Faizova

9 years old, Chelyabinsk

Elina Faizova

9 years old, Chelyabinsk
Diagnosis: Juvenile rheumatoid arthritis.
Abatacept was purchased for Elina at the cost of 37,700 rubles.

Katya Kapliy

3 years old, Ussuriysk

Katya Kapliy

3 years old, Ussuriysk
Diagnosis: Primary immunodeficiency. Muckle-Wells syndrome.
"Spread the wings" fund transferred 420,000 rubles for purchasing Anakinra medicine for Katya (the drug is not registered and thus not available for sale in Russia). These funds will last for the initial 6-month treatment course.

Vladislav Tikhonov

11 years old, Krasnoarmeysk (the Moscow Region)

Vladislav Tikhonov

11 years old, Krasnoarmeysk (the Moscow Region)
Diagnosis: Primary immunodeficiency. Wiskott-Aldrich syndrome.
How to help: Considering the poor prognosis of the disease, the age and condition of the patient, experts strongly advised that Vladislav should urgently undergo a bone marrow transplantation in a foreign clinic.

Vlad’s case drew attention of the Ministry of Health after the release of the story about him on NTV. On January 18, the boy’s mother received an official reply from the ministry, stating that the government will cover all expenses associated with the bone marrow transplantation performed in the University Hospital Freiburg (Germany). Signing a contract with the hospital and getting visas will take 1.5-2 months approximately. Right after that Vlad and his mother will leave for the transplantation.
The money collected for Vlad will be spent on the needs of other children suffering from immunodeficiency. If you wish to address your donation to a specific child, please let us know.

Kirill Boyarkin

7 years old, Moscow

Kirill Boyarkin

7 years old, Moscow
Diagnosis: Primary immunodeficiency. Chronic granulomatous disease.
Levofloxacin and Voriconazole (a supply for a 1-month course) were purchased for a total amount of 52,600 rubles. The Ministry of Health provided a supply of the drugs for 14 more days. Reserves will last until January 15. We very much hope that Kirill will get the medications for the next month from the Ministry of Health in early January. Otherwise, we will continue collecting money for the drugs.

Tamara Aksyonova

16 years old, lives in Rostov region .

Tamara Aksyonova

16 years old, lives in Rostov region .
Diagnosis: Juvenile rheumatoid arthritis.
How you can help: On October 27, 2012, Tamara was hospitalized in the regional hospital of Rostov, where she was supposed to receive treatment with prescription medication Enbrel that she’s been in desperate need of. Within the next 2 weeks it shall be clear if she will receive her next dose of Enbrel to continue her treatment. Tamara’s mother addressed Rostov’s regional chapter of Russian Ministry of Health with a complaint about the actions of their local hospital. We hope that the issue of supplying Tamara with her medication will be resolved without her mother having to appeal to higher authorities. If within the next 2 weeks Tamara doesn’t receive the next dose of her medication, we shall continue raising funds for her.

Kirill Orlov

3 years old, the Perm Region

Kirill Orlov

3 years old, the Perm Region
Diagnosis: Idiopathic thrombocytopenic purpura.
Mycophenolate mofetil was purchased for the amount of 5,650 rubles.
The medication is needed on a non-stop basis.

Rituximab medication for the Department of Clinical Immunology of the RCCH (Moscow)

Rituximab medication for the Department of Clinical Immunology of the RCCH (Moscow)

6 vials of Rituximab 500 mg for the total amount of 327,000 rubles were purchased for the Department of Clinical Immunology of the RCCH (Moscow).

Vfend for the Department of Clinical Immunology of the RCCH (Moscow)

Department of Clinical Immunology of the RCCH at the Ministry of Health of the RF

Vfend for the Department of Clinical Immunology of the RCCH (Moscow)

Department of Clinical Immunology of the RCCH at the Ministry of Health of the RF
The demand of the Department for this medication exceeds the supply paid for by the public funds allocated for the drug acquisition.
60 vials of Vfend 200 mg were purchased for a total amount of 372,000 rubles.

Tocilizumab for the Department of Clinical Immunology of the Russian Children’s Clinical Hospital

Department of Clinical Immunology of the RCCH (Moscow)

Tocilizumab for the Department of Clinical Immunology of the Russian Children’s Clinical Hospital

Department of Clinical Immunology of the RCCH (Moscow)
3 vials of Tocilizumab 400 mg at the total cost of 126,900 rubles were purchased for the Department of Clinical Immunology of the RCCH.

Semyon Kulakov

16 years old, the Irkutsk Region

Semyon Kulakov

16 years old, the Irkutsk Region
Diagnosis: Primary immunodeficiency, agammaglobulinemia, rheumatoid arthritis.
A wheelchair at the approximate price of 14,549 rubles was purchased for Semyon.

Nastya Zhuravleva

9 years old, Sochi

Nastya Zhuravleva

9 years old, Sochi
Diagnosis: Juvenile rheumatoid arthritis.
Aminosalicylic acid was purchased for an amount of 14,810 rubles.

Ilnur Ismagilov

17 years old, the Republic of Bashkortostan

Ilnur Ismagilov

17 years old, the Republic of Bashkortostan
Diagnosis: Primary immunodeficiency. B-cell deficiency (X-linked agammaglobulinemia).
A genetic research (mutation screening of the BTK gene) was conducted. The cost was 24,000 rubles.
Infliximab was purchased, the cost of the course of treatment was 76,000 rubles.

Timofey Kuleshov

1 year and 3 months old, Moscow

Timofey Kuleshov

1 year and 3 months old, Moscow
Diagnosis: Primary immune deficiency. Wiskott-Aldrich syndrome.
Owing to you, 258,000 euros were collected for a bone marrow transplantation to be performed in the Italian clinic “Spedali Civili di Brescia”.
Thanks everyone who participated!
On July 23, Timofey and his mother will fly to Italy. We will be desperately waiting for the news from the boy’s mother and will be posting them regularly on our website and in the Facebook group.

Egor Kutukov

1.5 years old

Egor Kutukov

1.5 years old
Diagnosis: Primary immunodeficiency. X-linked agammaglobulinemia.
A molecular genetic testing (mutation screening of the BTK gene) was conducted. The cost was 28,000 rubles.

Dima Vatagin

1 year and 7 months old, Stavropol

Dima Vatagin

1 year and 7 months old, Stavropol
Diagnosis: Primary immunodeficiency. Anhidrotic ectodermal dysplasia.
A genetic research (mutation screening of the EDA gene) was conducted. The cost was 12,000 rubles.

Valeriya Demkina

2 years old, Yaroslavl

Valeriya Demkina

2 years old, Yaroslavl
Diagnosis: Primary immunodeficiency. Muckle-Wells Syndrome.
Anakinra medication is needed on a constant basis! The cost of a 1-month course of treatment with this drug is approximately 50,000 rubles.

Sasha Kuvshinchikov

2 years old, the Tula Region

Sasha Kuvshinchikov

2 years old, the Tula Region
Diagnosis: Primary immunodeficiency. Chronic granulomatous disease.
The following drugs were purchased: Levofloxacin, Itraconazole, Ademetionine.

Daniil Chirikov

4 years old, Yakutia

Daniil Chirikov

4 years old, Yakutia
Diagnosis: Juvenile spondyloarthritis.
Infliximab was purchased for the amount of 49,995 rubles.

Lesha Romanov

13 years old, Buguruslan (the Orenburg Region)

Lesha Romanov

13 years old, Buguruslan (the Orenburg Region)
Diagnosis: Primary immunodeficiency. Chronic granulomatous disease. Generalized BCG infection.
2 packs of Vfend were purchased for a total amount of 54,600 rubles.

Rasul Aliev

2,5 years old, Derbent (Dagestan)

Rasul Aliev

2,5 years old, Derbent (Dagestan)
Diagnosis: Juvenile rheumatoid arthritis.
Tocilizumab was purchased for the Department of Clinical Immunology of the RCCH (Moscow), where Rasul was treated. The boy is home now.

Julia Romanova

9 years old, the Tver Region

Julia Romanova

9 years old, the Tver Region
Diagnosis: Juvenile rheumatoid arthritis.
Tocilizumab was purchased for the Department of Clinical Immunology of the RCCH, where Julia was getting treatment.

Tanzila Makchieva

3 years old, Shali

Tanzila Makchieva

3 years old, Shali
Diagnosis: Juvenile rheumatoid arthritis.
Medicine needed: Actemra.
The cost of a month course of treatment: $1,000. Needed constantly!

Ira Antipchenko

15 years old, the Volgograd Region

Ira Antipchenko

15 years old, the Volgograd Region
Diagnosis: Juvenile rheumatoid arthritis.
Tocilizumab was purchased for the Department of Clinical Immunology of the RCCH, where Ira was getting treatment.

Nurlana Abdullaeva

16 years old, the Moscow Region

Nurlana Abdullaeva

16 years old, the Moscow Region
Diagnosis: Primary immunodeficiency. Chronic granulomatous disease.
Russian Club of Luxembourg paid for a 2-month course of treatment with the following drugs: Co-trimoxazole, Itraconazole, Levofloxacin, Isoniazid, Pyrazinamide, Ademetionine.
There is a constant need in a supply of these drugs!!!

Rodion Nikolaev

7 years old, Berezniki (the Perm Territory)

Rodion Nikolaev

7 years old, Berezniki (the Perm Territory)
Diagnosis: Primary immunodeficiency. Hyper IgM syndrome, neutropenia.
Russian Club of Luxembourg purchased Pegfilgrastim (a supply for a 1-month course of treatment).

Liidzhi Mandrunov

10 years old, Esto-Altay village (Kalmykia)

Liidzhi Mandrunov

10 years old, Esto-Altay village (Kalmykia)
Diagnosis: Juvenile rheumatoid arthritis.
Russian Club of Luxembourg purchased 2 packs of Etanercept (a 1.5 month supply for Liidzhi).

Ekaterina Chaplygina

15 years old, Sergiyev Posad (the Moscow Region)

Ekaterina Chaplygina

15 years old, Sergiyev Posad (the Moscow Region)
Diagnosis: Juvenile rheumatoid arthritis.
2 vials of Tocilizumab 400 mg were purchased for a total amount of 109,000 rubles.

Julia Belikova

10 years old, Bryansk

Julia Belikova

10 years old, Bryansk
Diagnosis: Juvenile rheumatoid arthritis.
Fluconazole for a 2-month course of treatment was purchased for the amount of 7,200 rubles.

Margarita Zhuravleva

Margarita Zhuravleva

Diagnosis: Primary immunodeficiency, severe combined immunodeficiency (SCID). Post-transplantation condition.
Special thanks to Sky Express Airlines for providing free tickets from Mineralnye Vody to Moscow and backwards to Margarita and her mother. Owing to the company, Margarita was able to arrive to Moscow for examination without additional risk to her health.

Masha Nedelyaeva

9 years old, Vladimir

Masha Nedelyaeva

9 years old, Vladimir
Diagnosis: Juvenile rheumatoid arthritis.
Adalimumab (a 1-month course of treatment costs 74,000 rubles) is needed constantly!

Ilnur Tugushev

8 years old, Bugulma (Tatarstan)

Ilnur Tugushev

8 years old, Bugulma (Tatarstan)
Diagnosis: Primary immunodeficiency. X-linked agammaglobulinemia (B-cell deficiency). Chronic purulent bronchitis.
Thanks to the TransContainer company, there were purchased 2 packs of Tobramycin costing 178,000 rubles in total.

Liza Matveeva

5 years old, Kemerovo

Liza Matveeva

5 years old, Kemerovo
Diagnosis: Primary immunodeficiency. Chronic granulomatous disease. Liver aspergillosis.
A 2-month course of treatment with Voriconazole, Levofloxacin, and Ademetionine was paid for by the TransContainer company. The total cost of the drugs was 74,980 rubles.

Diana Selkova

10 years old, the Tver Region

Diana Selkova

10 years old, the Tver Region
Diagnosis: Primary immunodeficiency. Common variable immunodeficiency. Extrinsic allergic alveolitis.
Levofloxacinum and Itraconazole needed for a 2-month course of treatment were purchased for a total amount of 17,504 rubles.

Nastya Golova

1 year and 10 months old, Kurgan

Nastya Golova

1 year and 10 months old, Kurgan
Diagnosis: Juvenile rheumatoid arthritis.
Skyexpress company donated Nastya and her mother a homeward flight from Moscow, where the girl had been treated in the RCCH.

Fedor Konovalov

3 years old, Moscow

Fedor Konovalov

3 years old, Moscow
Diagnosis: Severe combined immunodeficiency (SCID).
November supply of Voriconazole was paid for by the TransContainer company.
A bone marrow transplantation was performed in Fedor. He needs Voriconazole (an antifungal agent) in the post-transplant period constantly!

Olesya Nazarenko

17 years old, the Penza Region

Olesya Nazarenko

17 years old, the Penza Region
Diagnosis: Primary immunodeficiency. Ataxia telangiectasia (also referred to as Louis–Bar syndrome).
A wheelchair was purchased for an amount of 10,790 rubles.

Veronika Voronina

2 months old, Moscow

Veronika Voronina

2 months old, Moscow
Diagnosis: Primary immunodeficiency, SCID, Omenn syndrome.
CliniMACS System (a sophisticated medical equipment necessary for performing bone marrow transplantation in Veronika) was purchased into the Department of Bone Marrow Transplantation of the RCCH (Moscow).
The cost of the equipment was 195,000 rubles.
The transplantation was performed in Veronika. She feels well now.
The post-transplant period will last 6-12 months. We will be following the girl’s state of health and will be posting the news on our website as well as in the Facebook and Vkontakte groups.

Mansur Erbiev

1 year and 8 months old, the Irkutsk Region

Mansur Erbiev

1 year and 8 months old, the Irkutsk Region
Diagnosis: SCID (Severe Combined ImmunoDeficiency).
CliniMACS System (a sophisticated medical equipment necessary for performing a bone marrow transplantation in Mansur) was purchased into the Department of Bone Marrow Transplantation of the RCCH (Moscow).
The cost of the equipment was 195,000 rubles.
The transplantation was performed, but unfortunately Mansur’s body rejected the donor's cells… Now a new transplantation is necessary. It is planned to perform it in Germany at the expense of the Ministry of Health of the RF. Mansur’s parents have signed all necessary documents and are waiting now for an opportunity for their son to receive the second transplantation.

Denis Dragunov

13 years old, Rostov-on-the Don

Denis Dragunov

13 years old, Rostov-on-the Don
Diagnosis: Systemic lupus erythematosus.
Rituximab was purchased for the Department of Clinical Immunology of the RCCH (Moscow), where Denis is currently being treated.

Andrey Mamasuev

11 years old, Ryazan

Andrey Mamasuev

11 years old, Ryazan
Diagnosis: Primary immunodeficiency, Nijmegen breakage syndrome. Autoimmune hemolytic anemia.
Rituximab was purchased for the Department of Clinical Immunology of the RCCH (Moscow), where Andrey is currently being treated.

Marina Schadrina

16 years old, Armavir

Marina Schadrina

16 years old, Armavir
Diagnosis: Systemic vasculitis. Wegener's granulomatosis. Secondary immune dysfunction, autoimmune syndrome.
Rituximab was purchased for the Department of Clinical Immunology of the RCCH (Moscow), where Marina is currently being treated.

Yaroslav Bezgodov

1 year old, Omsk

Yaroslav Bezgodov

1 year old, Omsk
Diagnosis: Primary immunodeficiency. Wiskott-Aldrich syndrome.
Yaroslav and his mother have gone to Italy for bone marrow transplantation. They will spend from 6 to 12 months there. We are following the developments and will be publishing the news on our website.

Anatoly Alekseev

6 months old, Yakutsk

Anatoly Alekseev

6 months old, Yakutsk
Diagnosis: Primary immunodeficiency. Chronic granulomatous disease.
Expenses for a 10-day course of Vfend and Caspofungin medicines were covered for Anatoly.
At this moment he is placed in the Russian Children’s Clinical Hospital in Moscow. Doctors are examining him and are to make a decision regarding the subsequent therapeutic approach.

Elena Matveeva

14 years old, Komsomolsk-on-the Amur

Elena Matveeva

14 years old, Komsomolsk-on-the Amur
Diagnosis: Juvenile rheumatoid arthritis.
Lena’s flight from Moscow to Khabarovsk was financed. Owing to this, the girl quickly got home from the hospital without additional health risks.

Ilya Silin

13 years old, Petrozavodsk

Ilya Silin

13 years old, Petrozavodsk
Diagnosis: Primary immunodeficiency, B cell-deficient agammaglobulinemia. Subperiosteal fracture of the distal metaphysis of the left femur with angular displacement.
3 pairs of special orthopedic shoes need to be purchased for the amount of 59,000 rubles.

Vika Kulagina

1 year and 10 months old, Kaluga

Vika Kulagina

1 year and 10 months old, Kaluga
Severe combined immunodeficiency (SCID). Bone marrow transplantation has been carried out.
Little Vika has spent over 1 year in hospital.
Now Vika is feeling well, and on August 9 she will finally go home!


Timur Boltaev

2 years old, Tomsk

Timur Boltaev

2 years old, Tomsk
Diagnosis: Primary immunodeficiency. Wiskott–Aldrich syndrome.
A two way air ticket from Tomsk to Moscow is needed every 2-3 months for a scheduled hospitalization.
The next hospitalization will last from July 31 to August 13.
Timur is currently hospitalized as planned, and is feeling well.
Air ticket for this particular hospitalization was paid for by Bazelevs Group.

Bagrat Saakyan

10 years old, Adygeisk

Bagrat Saakyan

10 years old, Adygeisk
Diagnosis: Primary immunodeficiency. Chronic granulomatous disease. Systemic mixed infection (bacterial, mycobacterial, fungal) affecting lungs and ribs.
Aminosalicylic acid was purchased. Bagrat has been discharged from the hospital, he is finally home now and is happy about the birth of his brother!

Varya Arzumanova

2 years old, Moscow

Varya Arzumanova

2 years old, Moscow
Diagnosis: Primary immune deficiency. Severe combined immunodeficiency (SCID).
Owing to almost 2,000 donors, 5,403,508 rubles were collected, and as a result bone marrow was transplanted.
Varya is under medical supervision now.

Sergey Petrov

14 years old, lives in Moscow Region.

Sergey Petrov

14 years old, lives in Moscow Region.
Diagnosis: Primary immunodeficiency, Hyper-IgM syndrome.
Prescription medication Octagam is needed – 130000 roubles a month (approx. $4334 US). The amount for Sergey’s treatment in February needs to be raised by Feb. 18, 2013.

Maksim Gulin

3 years old, Moscow

Maksim Gulin

3 years old, Moscow
Diagnosis: Primary immunodeficiency. Bone marrow transplantation has been carried out. Now Maksim has a very difficult and long-lasting post-transplantation period.
The following drugs were purchased for Maksim Gulin, staying in the Department of Clinical Immunology at the Russian Children’s Clinical Hospital (RCCH): Granisetron (1 pack), Rabeprazole (5 packs). The total cost was 10,637.26 rubles.

Expendable medical supplies for the Department of Clinical Immunology at the Russian Children’s Clinical Hospital (Moscow)

Children’s Clinical Hospital (Moscow)

Expendable medical supplies for the Department of Clinical Immunology at the Russian Children’s Clinical Hospital (Moscow)

Children’s Clinical Hospital (Moscow)
Expendable medical supplies were purchased for 35 children staying in the Department of Clinical Immunology at the RCCH for the total amount of 68,290 rubles..

Liza Kovaleva

18 years old, Perm

Liza Kovaleva

18 years old, Perm
Diagnosis: Systemic lupus erythematosus.
Liza needs 2 packs of Rituximab 500 mg. The cost of 1 pack is 34,000 rubles.

Katya Yudina

16 years old, the Samara Region

Katya Yudina

16 years old, the Samara Region
Diagnosis: Systemic lupus erythematosus.
Expenses for a course of treatment with the following drugs were covered for Katya: Granisetron (1 pack), Calcitonin (1 pack), Rabeprazole (5 packs), Mycophenolate mofetil (2 packs), Octreotide (10 packs), Mesna (1 pack). The total costs amounted to 47,385 rubles.

Maksim Moshkov

3 years old, Severodvinsk (the Arkhangelsk Region)

Maksim Moshkov

3 years old, Severodvinsk (the Arkhangelsk Region)
Diagnosis: Juvenile rheumatoid arthritis.
Etanercept was purchased in March for the amount of 36,700 rubles.

Oleg Golubkov

7 years old, Ekaterinburg.

Oleg Golubkov

7 years old, Ekaterinburg.
Severe combined immunodeficiency (SCID).
In April the Posaconazole drug was purchased for the amount of 48,000 rubles.
Oleg is currently staying in England, where he is being prepared for the bone marrow transplantation.
We will follow the developments.

Diana Lukmanova

6 years old, Neftekamsk

Diana Lukmanova

6 years old, Neftekamsk
Diagnosis: Juvenile rheumatoid arthritis.
Owing to your help we bought Etanercept in March, its cost was 36,700 rubles.
Besides, Diana’s family members succeeded in acquiring approval for getting the drug from the government free of charge.
We sincerely hope that Diana will start getting the medication for free in the coming months. At this moment Diana is supplied with it for the nearest 2 months. We will keep you informed.

Anya Vorobyova

9 years old, Murmansk

Anya Vorobyova

9 years old, Murmansk
Diagnosis: Juvenile rheumatoid arthritis. Сhronic uveitis.
Anya needs a non-stop treatment with Adalimumab, which costs 80,000 rubles. If not treated with the drug, severe pains in joints of the hands and feet start.

Artem Ivanov

6 years old, Tambov

Artem Ivanov

6 years old, Tambov
Diagnosis: Primary immunodeficiency. Unclassified defect in phagocytosis. Rheumatoid arthritis.
How to help: treatment with Etanercept (1 month costs 30,000 rubles).

Anya Maksimycheva

14 years old, the Moscow Region

Anya Maksimycheva

14 years old, the Moscow Region
Diagnosis: Primary immunodeficiency. Nijmegen breakage syndrome.
Vfend for a 2-month course of treatment was purchased.
In those 2 months Anya’s parents managed to start getting the specified medication for her from the government free of charge.

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