Hello!
My name is Tatiana. My son's name is Roma, he has just turned five.
He is very kind and cheerful, inquisitive and curious. He wants to be
in several places at the same time so as not to miss anything interesting.
That is, he used to be like that before April 2011, when a disaster occurred
in our family… Roma was hospitalized in the Infectious Diseases Department of
Kurchatov District Hospital with suspected intestinal infection. On the
second day, after the blood test results were ready, we were urgently
transferred to Kursk Children's Regional Clinical Hospital. No one explained
anything to me, the doctors only kept saying that "it can be treated
nowadays". Due to low blood counts – 7 for hemoglobin, 36 for platelets,
27 for leukocytes - Roma was immediately taken to the intensive care unit.
It took the doctors a month to figure out the diagnosis. Blood tests were done,
including a cytogenetic study, and a bone marrow sample was sent to Moscow.
Eventually Roma was diagnosed with myelodysplastic syndrome and we were told
that he needed bone marrow transplantation.
Our local doctors sent the record to R. Gorbacheva Institute of Pediatric Hematology
and Transplantology in St. Petersburg. We were invited for a consultation. Due to
low counts Roma was immediately hospitalized in the bone marrow transplantation department.
He has no siblings, so an unrelated donor is required. AiF Kind Heart fund helped us
raise 15,000 euro for the donor search. Apart from that, another 2,500 euro for the
transplant delivery are needed. Roma was also prescribed the antifungal drug Noxafil,
one bottle of which lasts three weeks and costs 43,000 rubles.
My son and I will be very grateful to all who help us. The life of a child depends on you!
Update as of December 16, 2011.
We would like to thank the owner of Solnechnaya Storona trademark,
Zelenya Dolina company and all the customers of Okay stores
who supported Helping is Easy event.
The money raised (100,000 rubles) were used to buy
3 bottles of Noxafil for Roma.
Update as of December 30, 2011.
Roma feels well. He is being monitored as a day patient.
Hospitalization for pre-transplantation chemotherapy is
scheduled for January 2nd.
Update as of January 7, 2012.
On January 3, Roma started pre-transplantation chemotherapy.
Roma is tolerating it well for now. Transplantation is scheduled for
January 12th. Noxafil is still needed.
Update as of January 18, 2012.
Bone marrow transplantation has been performed as planned, everything went ok,
Roma is now in cytopenia.The boy still needs Noxafil.
Update as of February 1, 2012.
Roma is gradually recovering after transplantation. His blood counts are
growing and a puncture is scheduled for the beginning of next week. Roma
started eating a little. He has no fever or symptoms of GVHD.
Roma still needs help with paying the bills for the medications that
were needed for transplantation and post-transplant period: Atgam, Mileran,
Tavanic, Tazocin, intravenous Vfend and Noxafil. Advita Fund's total debt
for the medications already amounted to 364,570 rubles.
Roma's mom is also asking for help with buying nutrition Modulen.
Update as of February 13, 2012.
We would like to thank the owner of Solnechnaya Storona trademark,
Zelenya Dolina company and all the customers of OKAY stores who have
supported Helping is Easy event and helped raise 115 000 rubles.
The money was used to buy medications for Roma, such as Tavanic,
tazocin, albumin and Vfend.
Update as of February 29, 2012.
On February 13 Roma has been discharged to the day patient facility.
So far everything is going ok: there is no fever, and signs of the
skin GVH reaction are not grave. Roma was allowed to drink delactosed
milk and he is eating better. Because of the hormones therapy he has
pains in his legs, but the doses are gradually decreased.
Vfend is still needed.
Update as of March 23, 2012.
Roma is being monitored at the day hospital. He feels well and has
no signs of GVHD. Based on control puncture he is in complete remission.
Control CT scan showed residual fungal lesions in his lungs, so
Vfend is not yet canceled.
Update as of April 10, 2012.
Roma is being followed as a day patient and he feels well.
He is improving in regards to aspergillosis and Vfend is
still needed. Unfortunately, Roma completely lost appetite
and the only nutrition he receives in Nutridrink.
Update as of April 28, 2012.
Roma feels well and is monitored as an outpatient. Cytomegalovirus
infection has reactivated and Roma received treatment with Valcyte.
The boy is in remission now, 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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