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Other Milana's photos

Hello!
I am the mother of a little girl from the northern town of Nefteyugansk. I have to ask you for your help hoping that your kind hearts won't stay indifferent.
My dear daughter Milana Kuzhenova is 2 years old. She is a very active girl, an only child in the family.
In May 2009 trouble came to our family: leukemia (acute myeloblastic leukemia, M7, result of myelodysplastic syndrome).
No one noticed how it all happened: first the diagnosis was "unspecified thrombocytopenia", then there were numerous examinations. Milana was examined at a hospital in Surgut, then at the Ekaterinburg oncohematology center. Only a year later the doctors arrived at the final diagnosis which was myelodysplastic syndrome, but by that time it had already turned into leukemia. The doctors were shaking their heads the disease is very grave.
There was a shock and there were tears but... one had to move on with the treatment, we want to live and we will live too!!! Our only chance to survive is a bone marrow transplantation but Milana has no brothers or sisters, and the preliminary donor search in the international registry did not yield any positive results either. By now we're already past 4 high dose chemotherapy courses, we are trying to get on with life and getting maintenance Dacogen therapy. But the doctors say that time is against us.
The doctors from the Raisa Gorbacheva Institute of Children's Hematology and Transplantology in St. Petersburg were invited, and another search for a donor was begun abroad. If it is fruitless again Milana is going to have a haploidentical bone marrow transplantation from me.
We came to St. Petersburg and have to rent an apartment here since we have no relatives or friends here. But this problem was almost immediately solved by the AdVita fund, and my daughter and I were not left alone. We are so thankful to them for that!!!
I am a doctor, my salary is not high, and I am the only wage earner in the family. I could not even dream of getting such great help.
Now we live and hope for the best. We believe in our strength, the doctors' expertise and God's help as well as in good people.
Many thanks to the AdVita fund that does good things and helps people! We hope for further help and support. Milana's treatment will require great sums of money which we do not have.
Thank you all very much, God bless you and your families!

Zhanna Vladimirovna Nelyubina, mother
Contact phone:
+7 (931) 207-95-49


 

Update as of January 10, 2010. On December 31, Milana started a new course of Dacogen, but she was still looking beautiful and fashionable for the New Year celebration in her new dress and with a necklace.
At the end of January, she will undergo puncture. Before the end of January, the doctors are hoping to hear from the International registry. If the response is negative, I will be considered as a partially matching donor.
Milana feels rather well, eats well and walks around. She is bothered by leg pains due to osteoporosis and takes Calcium pills.
Milana's mom

Update as of January 29, 2010. Milana is at the hospital where she is undergoing therapy with Dacogen. She feels well. The results of typing are ready and the preliminary search will be performed soon.

Update as of February 20, 2010. The fourth course of Dacogen is over. Milana and I are now staying at the apartment we rented. Last week's puncture testified to improvements. Milana's legs no longer hurt (the calcium level is normal again) and she now sleeps well. Next week we will have blood tests done.
Milana is active and cheerful as usual. She is a very communicative girl and loves playing with other kids, especially those older than her. When the weather permits she will go to a park to sledge. Our family sent Milana her felt boots so now we can stay outside for a long time.
There are very few potential donors for Milana in the international registry, the search is conducted every week as the data are renewed (the international database is renewed every day), for now the decision is to continue with Dacogen since the girl is responding to it very well and to keep track of the situation with donors.
Milana's mother

Update as of June 6, 2010. A donor for Milna was found. Transplantation is scheduled for July 7.

Update as of August 18, 2010. Milana had intestinal and skin GVH reaction (grade IV). The doctors managed to cope with the problem. At present only residual effects of GVH reaction remain on mucous membranes. Milana is now in hospital under the doctors' control and is feeling ok.

Update as of October 6, 2010. Currently Milana does not have GVHD symptoms; she is gradually taken off hormonal therapy. At the same time she underwent a course of photopheresis to prevent a GVHD recurrence after cancellation of hormonal therapy. If the cancellation of medications would not lead to any complications, she could possibly go home. She is in remission.

Update as of November 14, 2010. After cancellation of hormonal therapy, skin GVHD flared up again, and the same dosage was restarted. A cycle of photopheresis is planned. Milana walks, exercises and feels well.

Update as of December 9, 2010. Milana was confirmed to be in a complete remission. She will be taken off hormonal therapy, and GVHD is under control. Mila was discharged for outpatient monitoring.

Update as of December 27, 2010. Milana is now monitored at the day hospital. She takes Vfend and hormonal therapy. She feels well and is in a holiday mood. She walks around, studies alphabet and gains her strength. Recently she decided to become a dancer and started learning to dance. We are wising Happy New Year and lots of happiness to everyone who has helped us and continues to help. Thank you!
Milana's mom

Update as of February 28, 2011. Milana's steroid therapy was canceled, and as CMV titer went down to normal levels, she was taken off Valcyte as well.
She recently was sick with a viral infection and during antibiotics therapy, her liver counts increased. Vfend was temporarily stopped. Mila feels well.

Update as of March 17, 2011. Due to viral infection, Mila developed intestinal GVHD, grade IV, with internal bleeding. It has been taken under control with Campath and Remicade. Mila now needs infusions of large doses of immunoglobulins.

Update as of March 28, 2011. The situation with the intestinal GVH reaction is now under control but tests show that GVH reaction is very likely to come back so the Campath and Enbrel treatment has to be continued.

Update as of June 4, 2011. Mila was discharged for outpatient therapy. She has no symptoms of GVHD and feels well. She needs long-term therapy with Noxafil, a bottle a month (it costs 40,000 rubles).

Update as of June 25, 2011. Milana is feeling fine. The doctors monitor her condition in day care. Hormones dose is being gradually reduced. She still needs Noxafil.

Update as of July 23, 2011. Mila is doing well. She is still monitored as an outpatient. The doctors are gradually reducing hormonal therapy doses. She also takes CellCept.

Update as of August 9, 2011. Mila's doses are being reduced. She feels well, and is in a great mood. Mila loves going for walks, biking and walking in the Botanical gardens.
Mila's mom

Update as of September 15, 2011. Mila is still being monitored at the day hospital. Her doses of hormonal therapy are being reduced. Mila feels well and is very active.
Mila's mom

Update as of October 3, 2011. We would like to thank AiF-Kind Heart fund for buying 2 packs of Noxafil for Milana for the total of 99,800 rubles.

Update as of October 22, 2011. Milana was allowed to go home for a month. She feels well, but still needs Noxafil.

Update as of October 30, 2011. Hello! We are already at home. Mila feels well and misses Botanical Gardens from St. Petersburg. We are very grateful to our doctors and hospital personnel, AdVita fund and all the good people who showed their support. Stay well! Mila's control tests are scheduled for December - January. She continues taking hormones, but in very small doses, for prevention of skin GVHD. She takes Cortef as replacement therapy. She also still takes Noxafil.
Mila's mom

Update as of December 30, 2011. Milana is at home. She is feeling well and continues taking Noxafil. Planned tests are scheduled for January.

Update as of February 22, 2012. Milana came in for planned tests. She feels well.

Update as of March 1, 2012. Milana finished tests. She has slight skin GVHD and her liver counts are somewhat elevated. Mila was taken off hormones and her cyclosporine doses are being reduced. She was prescribed Heptral and Noxafil was replaced by Orungal. The next round of tests was scheduled for June.

Update as of April 28, 2012. Mila had to return to the clinic urgently because of high fever and dropping blood count. She is undergoing an antiviral treatment. The temperature is now normal and the blood count is gradually improving.

Update as of May 11, 2012. Milana had a cold and is now recovering, her blood counts are getting back to normal. The doctors allowed the girl to go home for the summer, and she is so happy about it. The only immunosuppressive drug left to take is losporinum (to prevent the GVH reaction), the doctors decided tos stop using the hormones. Milana is taking Nozafil again as a part of antifungal therapy.
Milana's mother

Update as of July 10, 2012. Mila is at home. She feels great. The next evaluation is scheduled for late September.

Update as of September 27, 2012. Hello! Mila is doing well. She spent summer at her grandmother's dacha. She eats more fruits and vegetables, but is still on a diet, as she continues taking immune suppressive drugs. Last week Mila was sick a little, so she is taking antibiotics and getting better. Mila and her grandma are great together - they sing and dance. Mila learned many songs by Anna German and Edita Piekha. She is learning to write and is making progress. Mila often thinks of her friends and wants to see them. Control tests are scheduled for October.
Mila's mom

Update as of November 12, 2012. Milana and her mother came for a follow-up examination. The girl was happy to come back to St. Petersburg and see her friends again. Milana is feeling fine. She is cheerful and very active. There are still some manifestations of a skin and eye mucosa GVH reaction, but they are under control. The dose of losporinum is gradually being decreased. In addition to that the girl is getting antiviral and antibacterial drugs as well as the antifungal Orungal.

Update as of March 4, 2013. Milana is now home in Nefteyugansk. Her blood counts are normal. Mild GVHD symptoms on her lips still persist. The girl continues receiving Cyclosporine and Orungal. Mila feels good. She plays a lot, walks outside, and skis.
Just recently, she got interested in the fairy tales by Krylov, she learns them by heart.

Update as of June 18, 2013. After losporinum was canceled, in spring Milana had a new attack of the chronic GVH reaction that affects her skin, liver and mucosa, so the doctors had to go back to the previous doses of the drug. The girl's liver counts are now normal, and the condition of her skin and mucosa is better, but in order to overcome the GVH reaction completely immunosuppressive therapy will have to be strengthened.
Last week Milana and her mother came to St. Petersburg for a follow-up examination. The results of the puncture are not ready yet, and the girl is still to have an external respiration test, but she has already been to the Botanical Garden, the circus and the theater. In March Milana turned 6 years old. She is a big girl now. She has serious hobbies too: she like reading and writing, she spend lots of time drawing and can sing very well.
New Milana's photos

Update as of July 19, 2013. Milana is undergoing treatment for skin GvHD: in addition to Cyclosporine, the girl was prescribed photopheresis, physical therapy and an immune suppressive drug Glivec.
Her joints condition appears better, fever has subsided and edemas have disappeared. Early in the treatment, Mila's hemoglobin level was too low but it has returned to normal since. Remission on her main diagnosis is stable, the donor bone marrow is working well.
July 7 marked 3 years since the transplantation, and Milana spent the day at the attractions and rides at the "Wonder-island", where she really enjoyed herself. She is feeling well, is in good spirits and does not miss home yet as she has not had a chance to see all of her St. Petersburg's friends yet.

Update as of July 30, 2013. After six photopheresis courses Milana's skin and joints got better, and the doctors considered it possible to let her go home to her grandmother's place to the Kurgan Region for two months. Photopheresis might be continued in autumn.
In the meantime Milana will be taking losporinum and Glivec. Also, the girl was prescribed Orungal to prevent fungal infections and ferrum medications to prevent anemia. The girl is feeling better. She walks and even runs a lot. Mila is not at all willing to leave St. Pete's: all of her friends are staying there.

Update as of July 25, 2014. Mila spent the last month in St. Petersburg. She came here with her mom and her grandma to get treatment for her chronic GVHD of skin, mucous membranes and joints.
In St. Petersburg Milana has started physical therapy. She was also administered four cycles of Mabthera and immunosuppressants with increased doses of Cyclosporine and CellCept in addition to previously prescribed Glivec. She is also taking Orungal to prevent fungal infections.
The therapy worked, and Mila's skin is looking much better. Her blood counts also improved, but she is still struggling to walk because of systemic sclerosis.
This did not stop her from enjoying her time in St. Petersburg: she took a boat trip along the rivers, visited the Divo-Ostrov amusement park, the dolphinarium and the aquarium.
Milana, her mom and her grandma are going home tomorrow, but they will be coming back to St. Petersburg in mid-September to continue treatment.

Update as of September 25, 2014. Milana arrived in St. Petersburg for a control examination. Condition of her skin and joints improved a bit. Photopheresis was postponed for now. It was decided to administer a cycle of Mabthera. The first injection has already been given in the day patient facility of R. Gorbacheva Institute of Hematology & Transplantation. The remaining three will be given at home, where she lives, following which the therapy will continue with Enbrel. Milana also takes Glivec, Cellcept and Cyclosporin, and undergoes physical therapy. Milana will return to St. Petersburg in January for her next examination.
The girl started school this year. On the first of September she attended a celebratory assembly at school. At present Milana studies at home with three visiting teachers. Milana likes studying very much.

Update as of September 26, 2016. It has been 6 years since Milana's bone marrow transplant. She came to St. Petersburg for a checkup which confirmed remission. She still has systemic sclerosis as well as joint stiffness because of her skin GVHD. She is also monitored by an ophthalmologist for eye GVHD and had punctal plugs inserted to relieve dry eyes. She is still taking immunosuppressants (Glivec, CellCept and Cyclosporine) and continues physical therapy. Milana comes for checkups every year. Her next checkup will be in early spring.
Last year she took part in many concerts organized by her music school. She also graduated from the second grade with straight As and is really excited about the familys new Maine Coon Mathilda. The girl is feeling fine: she sings and dances a lot and organizes concerts for her friends. She is home schooled and also studies piano in musical school.
Mila and her mother try to make the most of their time in St. Petersburg: they have been to "Bears on Buffalos" circus show, as well as a fairy tale musical "Chudo-Yudo" at the Music Hall that Milana absolutely loved.

Update as of October 16, 2017. Milana came to St. Petersburg for a medical examination and stayed for a month till the end of September.
Everything is fine as far as the primary diagnosis is concerned, but GVHD of mucous membranes, skin and joints is not subsiding, unfortunately. Doctors decided to replace Cyclosporine with Jakavi.
Milana has been at home in Nefteyugansk for three weeks already. She feels well and is active. She saw Swan Lake ballet while she was in St. Petersburg. She did not like the ballet much - as she grew, her tastes changed. She is now 10. Milana currently prefers different music - jazz and Michael Jackson. Nevertheless, throughout the whole month, while she was in St. Petersburg, she enjoyed attending yoga and ballet classes at 11th floor of Gorbacheva Institute.
When Milana returned home, she was happy to reunite with her cat. Milana studies at 4th grade curriculum with a visiting tutor and attends a music school.

Update as of March 28, 2018. Milana has grown taller and stronger, and this year she turned 11 years old. She gained weight and muscle mass in her arms, as she started swimming and has already mastered several styles. She also learned to dive and do somersaults under the water. The coach is very proud of her.
Milana is in fourth grade; her teachers visit her at home. She also studies at the music school. The condition of Milana's joints has not yet improved: her fingers have limited movement range and not fully mobile, but the teachers select the music pieces that she can play. One of the new hobbies is drawing, and she does very well. Milana continues taking Jakafi, Glivec and Cellcept. Currently, she is undergoing an evaluation in St. Petersburg.
Milana needs Jakafi that costs over 200 thousand rubles per package. Please help us raise funds for this medication!
New photos of Milana

Update as of April 26, 2018. Milana had contracted acute respiratory viral infection recently and is now undergoing treatment at home. GVHD symptoms remain unchanged. She continues to take in Jakafi and other drugs.
Mila really wants to go to the swimming pool. She usually has swimming classes three times a week, but at the moment she has to stay at home due to the cold.
The teachers don't visit her because of the quarantine with flu, and Milana also couldn't see the concert organized in the music school. Mila is restless and is looking forward to going to Shadrinsk with her grandmother. Meanwhile, she trains her cat to jump through the hoop. It is snowy in Nefteyugansk, no sign of spring yet, and right now it would be a challenge to go for a stroll.

Update as of May 23, 2018. Milana is at home in Nefteyugansk. She recovered from a cold, but still has GVHD symptoms. Milana finished the 4th grade with As and Bs. She also visits swimming pool and music school. Recently she had a recital for the 3rd year of music school.
Milana's grandmother went to Shadrinsk, and Milana plans to visit her in about 10 days. For now, she is waiting for her medical evaluation documents to be completed. It is cold in Nefteyugansk - rains and snows periodically - and Milana is looking forward to warmer weather.

Update as of June 19, 2018. Ten days ago Milana left for the city of Shadrinsk to see her grandparents. GVHD manifests itself the same as before: Milana has symptoms of scleroderma, and she has to continue taking Jakavi. Before her departure all medical documentation was finalized and Milana also underwent massage therapy.
In Shadrinsk Milana attends a swimming pool and she even learned to jump from a diving board. Milana is happy to spend time with her friends, who have been waiting for her return for a long time. It is not very warm in Shadrinsk, but everything is in blossom already. Milana has been helping her grandmother with the garden. The only thing that makes Milana sad is that her cat Matilda is not around. The cat was left in Nefteyugansk.

Update as of September 14, 2018. Milana has arrived to St. Petersburg for testing and evaluation. Everything is well with her primary diagnosis, but she continues to suffer from GVHD. The doctors will confer about it next week.
Milana goes to physical therapy to exercise hand joint contractures. She received an orthotic wrist split that she must sleep in. Mila is feeling rather well, but is concerned that she is missing a lot of school. She is in 5th grade and will have many new subjects this year. Mila is worried that she wont be able to catch up with her classmates. While in St. Petersburg, she went to the circus and a mime show, where she even went backstage.

Update as of October 31, 2018. Milana is feeling well. She finished the first quarter with all As and is enjoying the school break. She goes swimming four times a week and is able to swim 8 to 10 pool lengths each time. At home she likes to draw and knit doll dresses from rubber bands.
When school is in session Milana is unable to meet her friends - theres too much homework and Mila gets tired. Recently it started snowing; Milana is happy about that and wants to go skiing. She occasionally wears hand orthotics at night.
Recently Mila and her mom went to Surgut to see Kristina Orbakaites concert, but Mila didnt like the music all that much.

 

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