Hello, my name is Irina Zenevich and I am asking for help for my son Danechka.
Our family circumstances are difficult. We live in Nizhny Tagil. In 2005
I married a great man, and a year later our son Danila was born. It seemed
that we had everything to be happy - life was so good to us! However,
disaster always takes one unawares.
On September 9, 2007 my son and I were hospitalized at the Oncology and
Hematology Department in Yekaterinburg. In the hospital Danya was almost
immediately diagnosed with acute myeloblastic leukemia. The treatment
lasted for two years, and our son achieved remission. When Danechka
was finishing maintenance therapy, we had another reason to be happy -–
our daughter Vika was born. We thought that our misfortunes had ended -
but, disappointingly, Danya had a relapse in just three months.
This meant two more years of painful treatment. Since a second
relapse was very likely, we were referred to R. Gorbacheva Institute
of Pediatric Hematology and Transplantology in St. Petersburg for
bone marrow transplantation. Danya's sister did not match as a donor,
so an unrelated donor had to be found in the International Registry.
We were helped with the payment for the donor search (15,000 euros)
and the delivery of transplant (2,500 euros) by "We're Together"
charity.
On May 20, 2011 Danya underwent bone marrow transplantation.
However, complications (fungal infection in his lungs) appeared after it.
To overcome them Danya needs the antifungal drug Vfend, one package of
which costs around 27,000 rubles and lasts a week. It has to be
taken for a long time.
Our family is supported only by my husband. I am not working, as I am
always at the hospital with Danila. I am appealing for help to all
the kind and good-hearted people!
Update as of September 6, 2011.
Danechka completely recovered after transplantation. He is in remission
in regards to primary diagnosis, but is currently in the hospital with
acute cytomegaloviral infection. Danechka needs continuing help with
medications such as Cymevene, Vfend, Heptral and immunoglobulins. He feels rather well.
Update as of September 9, 2011.
Danya was discharged for day hospital and he feels well. He has signs of
GVHD of skin, and he also tested positive for cytomegalovirus.
He receives appropriate therapy.
Update as of September 22, 2011.
Danya got strong cough and was referred to CT scan of lungs.
His skin GVHD is under control, but he has some problems still.
Vfend is needed.
Danya's mom
Update as of September 26, 2011.
Based on CT scan of lungs, no pathology was seen.
There is an upper respiratory infection and Danya
receives appropriate therapy. For GVHD of skin,
Danya was recommended photopheresis.
Update as of October 28, 2011.
Due to skin GVHD Danya receives therapy with Mabthera.
The therapy is now being stopped temporarily while Danya is
taking antibiotics for bronchitis.
He also receives photopheresis therapy.
Update as of October 30, 2011.
Based on evaluation results, Vfend for Danya was replaced by
Noxafil. He continues therapy for bronchitis.
Update as of November 12, 2011.
Danya is continuing photopheresis course and feels rather well.
Bronchitis was taken under control.
Update as of November 29, 2011.
Danya's skin GVHD is improving. He continues therapy with
hormones and photopheresis. Noxafil is still needed.
Update as of January 12, 2012.
Danya is being monitored as a day patient. His skin GVHD is improving.
Danya receives therapy with Enbrel and CellCept, as well as hormonal therapy.
Noxafil is still needed.
Update as of January 25, 2012.
Danya had drastic loss vision in one of his eyes. MRI is scheduled for tomorrow.
His hemoglobin and platelet counts are low still, and in addition Danya
continues having chronic skin GVHD. He is in remission. Noxafil was replaced by
Vfend again.
Update as of February 8, 2012.
Based on MRI results, no lesions were seen, but Danya's vision in his
left eye has not recovered and the reason for that is unclear.
His platelets are still low. Skin GVHD is under control, but unfortunately,
planned tests for infections discovered toxoplasmosis and Danya is now
receiving appropriate therapy. He feels rather well and is being
treated as a day patient.
Update as of February 29, 2012.
The ophthalmologist diagnosed Danya with retinal detachment in one eye,
and the eyesight in the second eye is deteriorating too. The reasons of
retinal detachment are unclear. Most likely the boy will undergo laser
correction at the Pediatric Academy. The basic disease is in remission,
toxoplasmosis tests are negative after a course of antibiotics. Because
of the skin GVH reaction photopheresis has been resumed.
Danya is feeling ok and has no fever, but he is not eating well.
His weight is only sustained by Nutridrink.
Update as of March 23, 2012.
Surgery on Danya's eye at Pediatric Academy is being postponed
due to reactivation of cytomegaloviral infection. Danya has temperature
and was prescribed NeoCytotect. His skin GVHD is improving and the
hormonal doses are being lowered.
Update as of April 10, 2012.
Danechka is still treated for CMV infection and chronic GVHD
with skin involvement. He receives Сусlosporine, Cellcept,
Gleevec and Vfend. Danya feels rather well.
Update as of April 28, 2012.
Danya underwent an ophthalmological surgery at the Pediatric academy.
He is now recovering, but still has signs of skin involvement with GVHD.
Vfend is still needed.
Beneficiary:
Non-Profit Organization
"AdVita Charitable Foundation"
acc. 40703840712001000468 Beneficiary Bank:
JSC Bank Otkritie, Moscow
SWIFT: RUDL RU MM
For Petrovskiy branch,
St.Petersburg
SWIFT: RUDL RU M1PET Adress of Beneficiary Bank:
191186, Saint-Petersburg Russia,
Nevsky pr. 26
Correspondent Bank #1:
Bank of New York Mellon,
New York, USA
SWIFT: IRVT US 3N Correspondent Account No:
8901003069
Correspondent Bank #2:
JP Morgan Chase Bank,
New York, USA
SWIFT: CHAS US 33 Correspondent Account No:
822839205
*,**
Beneficiary:
Non-Profit Organization
"AdVita Charitable Foundation"
acc. 40703978312001000468 Beneficiary Bank:
JSC Bank Otkritie, Moscow
SWIFT RUDL RU MM
For Petrovskiy branch,
St.Petersburg
SWIFT RUDL RU M1PET Adress of Beneficiary Bank:
191186, Saint-Petersburg Russia,
Nevsky pr. 26
Correspondent Bank #1:
Deutsche Bank AG,
SWIFT: DEUT DE FF Correspondent Account No:
9477134
Correspondent Bank #2:
Commerzbank AG,
Frankfurt am Main, Germany
SWIFT: COBA DE FF Correspondent Account No:
400886482900
*,**
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