Hello,
I was postponing doing this until the last moment. I did not want to
ask for help. I thought I could cope on my own. There are so many
people who need help more than we do. But I am afraid I can not do it
by myself at this time.
In April 2009 my daughter Nastia was diagnosed with anaplastic anemia.
This is a kind of disease that disrupts bone marrow function and
which, as I know now, does not respond to treatment very well. And
treatment for it is very expensive and lengthy.
On April 16, 2009 Nastia started immunosuppressive therapy with
Cyclosporine A (Sandimmune Neoral). For six months, Nastia was
undergoing therapy at home with regular visits to the hospital for
control blood tests. During that time, Nastia received several blood
transfusions. The control tests she had in October 2009 showed that
the therapy with Cyclosporine did not produce stable result. The
doctors decided to strengthen therapy with additional course of
antilymphocyte globulin (Atgam) followed by long-term Cyclosporine
therapy.
On January 21, 2010 we were admitted to Leukemia Chemotherapy Unit of
Children's hospital No.1 for this course of therapy. Nastia is now at
the hospital. Most of the therapy is behind us. Nastia already feels
better. The doctors promised to let us go home soon.
We still will need to be on
treatment for at least a year. Our relatives help us as much as they
can, but we still do not have enough money.
Please help me and my daughter.
With respect and gratitude,
Irina Lemnitskaya
Home address:
192029, St. Petersburg,
Ul. Babushkina, d. 22, kv. 56
Contact phones:
+7 (921) 773-07-08
+7 (812) 346-63-61
Update as of July 5, 2010.
After a course of Atgam, the results are not yet discernible. Nastia
still depends on blood transfusions, and she gets a transfusion once
a month. She received the last r-mass transfusion on June 29, 2010.
She is continuing therapy with Cyclosporine with constant control and
dose correction. The last test result (as of June 28th) showed elevated
iron levels in her blood due to frequent transfusions. A therapy
to reduce iron is under discussion.
Nastia and I are very grateful to AdVita fund and everyone who helped
us deal with our problems. We are ebormously grateful to Arthur and Irina.
Wishing you and your children to stay in great health!
Nastia's mom
Update as of July 30, 2010.
It was decided to postpone therapy with Exjade to lower iron levels
because it has not grown significantly compared to the previous test results.
Control check of iron levels is scheduled for the first week of August.
Nastia feels well. Her hemoglobin count is 83 g/l.
Nastia's mom
Update as of August 10, 2010.
Nastia is at the hospital on blood transfusions. According to her doctors,
she did not respond to Atgam therapy. In September - October she will
undergo a second cycle.
Update as of December 16, 2010.
At the end of October, Nastia had CT scan that did not show any
significant improvement. However, the doctors decided to cancel
the second cycle of Atgam, as the first one did not show any
response and Nastia did not tolerate it well.
She is still dependent on blood transfusions. For almost two months,
Nastia was at the hospital where she received Exjade, which she had
trouble tolerating as well. During that time, Nastia received two
blood transfusions. The level of ferritin went down. Exjade therapy
was stopped. The CBC results as of December
16th are: Hb = 85 g/l, and Tr = 80.
Nastia and I would like to thank AdVita fund and everyone who
is helping us. We are enormously grateful to Andrei for his help
and wonderful New Year's gift for Nastia.
With gratitude and respect,
Irina, Nastia's mom
Update as of February 8, 2011.
Nastia is now at home. She feels well, draws, makes art and
periodically comes for control tests to Children's hopsital No.1.
She is schooled at home, but hopes that someday she can sudy with
all her classmates! She takes cyclosporine and has stable blood
counts. The second cycle of Atgam is still being discussed.
Nastia's mom
Update as of March 28, 2011.
Nastia still regularly arrives at Children's Hospital No. 1
for blood transfusions every 3 weeks. Her further treatment
is being discussed.
Update as of April 19, 2011.
Nastia did not tolerate well the last blood transfusion (April 13th) due
to severe allergic reaction. After the transfusion, she got a fever and had
to stay in the hospital until her condition improved. Her hemoglobin count
rose to 103 g/l. With low hemoglobin, Nastia gets tired easily and sleeps a
lot, but she still tries to do everything she can to be a good student. The
teachers are happy with her and Nastia is hoping to finish the school year
with good and excellent grades. The doctors decided to offer her the second
cycle of immunosuppressive therapy. As soon as the hospital receives
thymoglobulin, Nastia will be referred for hospitalization.
Nastia's mom
Update as of September 11, 2011.
In a week Nastia is going to be hospitalized for a Thymoglobuline course.
She is feeling ok.
Update as of September 20, 2011.
During planned tests prior to the course of thymoglobulin,
Nastia was diagnosed with transformation of aplastic anemia
into myelodisplastic syndrome, which can only be treated
by bone marrow transplantation.
Immunoglobulin injection was canceled. As soon as typing
results are ready, transplantation will be discussed.
Nastia feels OK.
Update as of November 29, 2011.
Based on typing results, Nastia has potential donors at the
international registry. It was decided to initiate the donor search.
Today we received a bill from the registry and are starting fundraising
to pay it off. Nastia just returned from a consultation at R. Gorbacheva
Pediatric Hematology & Transplantation Institute and she feels well.
Update as of December 10, 2011.
We are sincerely grateful to AiF-Kind Heart fund for agreeing to help
with paying for the donor search for Nastia.
Update as of February 11, 2012.
We are sincerely grateful to AiF-Kind Heart fund for paying the bill for
donor search! The money raised was transferred to the registry.
We are enormously grateful to everyone who responded to our request for
help and helped raise required amount (particularly, Mechtrans Co.).
Donations we are currently receiving will be used to buy medications
needed during and after transplantation.
Nastia's mom
Update as of February 26, 2012.
On February 25th a charity concert took place at our home town of Suoyarvi in
Karelia. It was organized by the teachers of Souyarvi school and the students were
performing in it. In addition, the teachers organized fundraising campaign to help
our family and support Nastia during her treatment and bone marrow transplantation.
Many people from Suoyarvi responded, including employees of Pension Fund, Sberbank.
police, district hospital, city and district administration, education department,
land committee, daycares and schools of our district, social services center Zhuravushka,
vocational school No.6, Lesnaya Polyana preventative medicine center, bakery, cardboard
factory, Cosmos movie theater, Severny Soyuz company, Elki-Palki cafe, Autoparts
magazine (manager Kurus), and businessman Vorobiev. The total amount raised amounted
to 74,000 rubles.
It's too bad that I cannot come to Suoyarvi to hug and thank everyone who was touched
by our problem. Dear friends, thank you for your response! Your help, care and support
are very important to us!
Irina, Nastia's mom
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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