Dear friends,
Our family is in a difficult situation and needs your help. Our daughter
Samira will turn three this September. A year ago we learned that she
has a very rare genetic disorder, Hurler's syndrome. It means that
mucopolysaccharides, a kind of metabolic products, are accumulated
in her organism, and this is harmful for all organs and systems:
for vision and hearing, for liver and spleen, for cardiovascular,
respiratory, nervous, musculoskeletal, and digestive systems.
Without treatment, a child with Hurler's syndrome, also called
mucopolysaccharidosis type 1, lives about 10-12 years.
But, after the first shock, we began search in the Internet in order
to find out what and how we can do now. And we learned two things.
First, there is a drug named Aldurazyme, which should be administered
once a month, and all these excess metabolic products will be removed
from the organism. But this drug costs a lot; the yearly amount is
about 6 to 8 million roubles (approx. $250,000). Our hospital has
addressed the local Department of Public Health, we have written to
the Russian Ministry of Public Health and to various officials, but
there is no result, we just can't get this drug from the public
health authorities. Time goes by, but nothing changes. There is
no drug, no treatment, and Samira's condition deteriorates day by day.
Second, it turned out that it is possible to cure Samira's type of
mucopolysaccharidosis by bone marrow transplantation! If the donor
bone marrow is successfully engrafted, the required enzyme will be
produced in almost normal amounts, about 70-90%! It means that our
child can be almost healthy, can run, jump, and go to school.
She will live and make us happy.
We arrived for a consultation at the Raisa Gorbacheva Institute of
Child Hematology and Transplantology in St. Petersburg. Specialists
confirmed that they are ready to perform bone marrow transplantation
as soon as a donor is found in the international registry. They were
very kind to us, and it was the first time when we felt that our
daughter has a chance for life, for normal life.
Now we need 15,000 euro to pay for donor search in the international
registry and also 2500 euro to deliver the graft to Russia. The Russian
Help Foundation is ready to transfer 10,000 euro to the registry
and to pay for the drug till a donor is found. However, we must
somehow raise the remaining 7500 euro. We asked people for help
via local TV but got only 1000 roubles (less than $40). Of course
this sum is not enough for our child. And now we are asking you:
please help us raise the money to save our only child! We rely
on your kindness and understanding.
The best dream of our family is to see our beloved daughter
in good health. Every day of her life is a gift for us. We don't
want to lose her! Her disease is serious, but treatment is possible,
and this means that there is still hope.
Yours respectfully,
Venera R. Valieva
ul. Chapaeva 16-113,
Kazan, Tatarstan, 420037 Russia
Phones:
+7 (843) 5107691 (home)
+7 (904) 6644082 (cell)
Update as of July 29, 2011.
We are sincerely grateful to Raisa Gorbacheva fund in London for
paying off the debt and activation of a donor.
Update as of July 31, 2011.
Samira is now at home where she takes Aldurazyme (paid for
by Tatarstan Republic Health Ministry). She has slight improvement.
Russian Help Fund transferred 10,000 euros to S. Morsch registry
as promised. As of now, the bill for search and activation of a
donor is fully paid. We need to raise 2,500 euros for
delivery of transplant by courier.
Update as of February 22, 2012.
Only one donor for Samira was found at the international registry,
and it was not a full match. Her parents did not agree to transplantation
from this donor. Samira is now continuing therapy with Aldurazyme.
As donors' database is being updated all the time, after some time
the search may be restarted.
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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