Other Anya's photos

Hello!
Anya Fedotova was born in 1998 in Kaliningrad. In 2001 she was left without parents, as her mother lost her parental rights and she does not know her father. That year Anya was placed at Nadezhda orphanage in Kaliningrad. Then she was transferred to Gavrosh orphanage, where she currently lives. During all that time, Anya's mother never showed any interest in her daughter. In 2002, Anya was diagnosed with a severe disease, acute lymphoblastic leukemia.
Anya is a very social, sweet and friendly girl. She always displays sympathy for other kids when they feel sad and tries to make them feel better. She never hurts others and respects adults.
Anechka is a very smart girl. She loves to read, cross-stitch and draw. Most of all she loves to study and she dreams of going back to school. Unfortunately, due to her poor health, she has to miss many school days. However, even at the hospital she stays optimistic and believes that she will get better and will see her classmates again. She misses them a lot. In the future, she wants to become a pediatrician to help other sick children.
The administration, employees and children of Gavrosh orphanage would like to ask all caring people to help Anechka with bone marrow transplantation. While the operation itself will be paid for by the federal budget, the search for the donor at the European registry requires 15,000 euros and the delivery of transplant from the European collection center to St. Petersburg takes another 2,500 euros.

Contact phone:
+7 (901) 300-00-25

Letter from Gavrosh orphanage
Bill for the donor search in Germany

Update as of November 20, 2007. We would like to apologize for misinforming our donors regarding fundraising for donor search for Anya. As we learned, a donor who promised to transfer the necessary amount to the registry was unable to do so and did not tell us about it. The donor search for Anya was started in advance of payment.

Update as of November 24, 2007. We transferred 7,000 euros to Stephan Morsch registry for the donor search for Anya.

Update as of December 18, 2007. We transferred 8,000 euros to Stephan Morsch registry for the donor search for Anya.

Update as of January 23, 2008. Anya is completing chemotherapy and will be discharged next week. Her Gavrosh orphanage has been converted into a school for foster parents, and Anya will be transferred to Rodnichok orphanage. The search for the donor is continuing.

Update as of March 5, 2008. A donor for Anya was found!

Update as of March 19, 2008. Anya accompanied by a nurse will come to St. Petersburg on March 23. The girl needs to rent an apartment for the time before and after the transplantation. The hospitalization at the clinic is scheduled for April 1.

Update as of March 25, 2008. On March 26th Anya will be hospitalized at BMT clinic for preparation to transplantation. The girl feels well. The transplantation is planned for beginning of April. We are sincerely grateful to an anonymous supporter for her help with paying for delivery of transplant and sitter's services.

Update as of March 29, 2008. The pre-transplantation chemotherapy will start on April 1. Anya is now at the clinic and feels well.

Update as of April 7, 2008. Anya is getting ready for transplantation. She is nauseous, but ready to fight. Anya spends time reading and drawing.

Update as of April 18, 2008. It has been a week since Anya's transplantation. For now, she is in a difficult condition and has temperature.

Update as of May 5, 2008. Anya recovered after the transplantation. She was allowed to go for walks.

Update as of May 25, 2008. Anya was discharged for outpatient monitoring. She feels well. Anya needs Vfend medication (100 mg) twice a day. A package with 200 mg dosage that costs 25,000 rubles will last her two weeks.

Update as of July 6, 2008. Anya suffers from a skin reaction of graft versus host disease. She now receives hormonal therapy and Mabtera therapy. She is also planned for injections with Enbrel.
We are enormously grateful for their continuing support for Anya to Irina (she paid for medications for Anya for 200,000 rubles), Ruslan (he helped to find and rent an apartment for the next two months) and Alexander who paid for a course of Enbrel. We would also like to thank all the blood donors and Anya's supporters who continue helping Anya

Update as of August 3, 2008. Anya was discharged from the hospital. As an outpatient, she receives Pentaglobin intravenously, and she takes anti-fungal and anti-viral drugs. She feels relatively well.

Update as of August 26, 2008. Anya was taken off hormones and Valcyte. Her blood counts started to rise. She enjoys drawing and cross-stitching.

Update as of September 11, 2008. Anya's skin reaction of "graft versus host disease" had worsened, so she was again put on hormonal therapy. In addition, her temperature periodically rises, but the cause for it has not yet been determined.

Update as of September 16, 2008. It turned out that Anya's high temperature is also a symptom of GVHD. She was prescribed hormonal therapy again. The girl is now being monitored by the doctors at the clinic.

Update as of October 2, 2008. Anya's skin GVHD returned. She is monitored as an outpatient and was prescribed Entocort.

Update as of November 16, 2008. Anya's condition improved and her hormonal therapy doses are gradually being reduced under a protocol. We are sincerely grateful to Irina, Anya's continuing supporter, for covering the cost of 8 packages of Vfend (200 mg). This medication supply should last Anya for two months.

Update as of December 12, 2008. Anya's GVHD worsened again and she was prescribed hormonal therapy again.

Update as of December 22, 2008. Anya needs 4 infusions of Mabtera, 500 mg each. The total cost of the medication is over 200,000 rubles.

Update as of January 13, 2009. Due to MabThera therapy, Anya's GVHD symptoms are going away. Her hormonal therapy dosage is starting to decrease.

Update as of March 6, 2009. Anya's GVHD worsened and she was prescribed hormones again.

Update as of May 12, 2009. Anya is doing well. She studies, draws a lot and even participated in the International Drawing competition.

Update as of June 17, 2009. Based on test results, Anya has low cortisone levels and was recommended to visit an endocrinologist. She continues having minimal GVHD symptoms. Anya feels well.

Update as of July 30, 2009. Anya is now suffering from either allergic reaction or GVHD, as her feet and palms are affected. Anya is now at the hospital and she receives hormones and IV drip with potassium. The allergy specialists' consultation is planned for August 4th.

Update as of July 31, 2009. Even on hormonal therapy, Anya still has redness and burning in her feet. On Monday, August 3, Anya will undergo skin biopsy.

Update as of September 8, 2009. Anya still has symptoms of skin GVHD, while she is on hormonal therapy and Gleevec. Anya started going to school, and she really likes studying.

Update as of October 12, 2009. Anechka still has signs of skin GVHD and she was prescribed experimental therapy. Before going to sleep, Anya has to be put ointment on (Advantan and Bepanten) and wrapped in plastic, which creates a sort of greenhouse effect. It is not very comfortable to sleep this way, but Anya can see that it helps her and tolerates it.
For now, Anya does not go to school and studies at home.

Update as of October 16, 2009. Anya's chronic skin GVHD (graft versus host disease) worsened on the affected skin and mucous tissue. Since GVHD can be mitigated by the levels of hormones, Anya's hormonal therapy dosage was increased and she was also prescribed Gleevec.

Update as of November 10, 2009. Since May 2008, Anya has been living in AdVita Fund's volunteer's family (I am a dispatcher for blood donation line). In October of the same year I became Anya's legal guardian.
Currently, Anya suffers from acute skin GVHD. She was prescribed a course of hormonal therapy (methylprednisolone) and Gleevec. These medications are helping to alleviate "graft versus host" disease.
Anyuta goes to school, and completed the first quarter with excellent grades. She reads a lot, cross-stitches and draws. She really wants to get well soon.

These are new photos of Anya.

Irina, her legal guardian

Update as of January 19, 2010. Anya will be installed a central catheter for photopheresis procedure, during which some of patient's blood is taken out, divided into leukocytes, plasma and erythrocytes on the centrifuge, leukocytes are radiated by the special equipment and infused back into the patient.
The doctors are hoping that this therapy will finally allow taking chronic GVHD under control. Anya is feeling well. Anya got very upset that she will have to miss school for two months.

Update as of April 7, 2010. After the second course of photopheresis, Anya's scleroderma (tightening of skin, lack of elasticity) worsened. To allow Anya move without pain, we use special moisturizers: Bioderm, Elidel, Advantan and Triderm creams and lotions. We use Solcoseryl to treat wounds. GVHD involving lungs is suspected, as pleural function is low, and Anya is breathing with only half of the capacity.
She also has mild heart failure, and as a result - drastically increased blood pressure. Anya constantly has to control her blood pressure and take Enap and Corinfar retard.
Anya is under continuing monitoring by the doctors at the hospital. Due to severe intoxication, she was taken off all antifungal and antiviral drugs, and antibiotics.
For a week, Anya was on detoxification. By now, she had completed six courses of photopheresis and at the end of the month she will have 7th-8th procedures. Although the effect was not as good as the doctors expected, we are hoping for the best.
We are very grateful to everyone for their support, and to AdVita fund - for helping us buy medications.
Irina, Anya's legal guardian

Update as of August 18, 2010. Anya undergoes photopheresis therapy monthly.
In August Anya's hemoglobin dropped to 79. Anya needs help from blood donors with blood type B(III) Rh(+). Due to hot summer, Anya again has dehydration in severe form, the treatment for which requires special procedures and medications. Her blood pressure has been unstable.
Irina, legal guardian

Update as of June 8, 2011. Due to adoption, Anya's last name changed to Burilova.

Update as of November 26, 2011. Anya is continuing immunosuppressive therapy. Skin GVHD is not yet controlled. The doctors recommended equine therapy to her. We found a trainer for Anya, and she cannot wait to start. Please help us with paying for the sessions.
Anya's mom

Update as of January 18, 2012. There remain signs of a chronic skin GVH reaction. Anya does hippotherapyand there is progress in the treatment of acrocontracture, and her mood has improved greatly too. The girl does very well at school.

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