Hello!
My only daughter Nastenka is 2.5. She has a very rare disease, osteopetrosis,
or marble bones disease.
We learned about it when Nastia was just three months old. This is a hereditary
illness; it presents itself only if both parents of the child are carriers
of a defective gene. The disease causes bones to become dense, the bone marrow
stops performing its hematopoietic function, the skull's openings close, and
the child becomes blind and deaf. And dies.
Previously, the marble bones disease was considered incurable, and the affected
children barely lived until three. But it turned out that there is one way
to overcome this illness: bone marrow transplantation.
Several years ago, a boy with osteopetrosis underwent transplantation in
St. Petersburg and he is now healthy. Our last hope is transplantation. However,
we are unable to pay for the search for unrelated donor at Morsch registry.
I work as a therapist and my husband lost his job due to financial crisis.
We have an enormously important request: please help us save our daughter!
She only has one chance to live and no time to wait!
Tatiana Ilder
Home address:
428025, Chuvashiya,
Cheboksary, pr. M. Gorkogo, 30-124
Contact phone:
+7 (927) 848-93-34
Update as of April 16, 2009.
We are sincerely grateful to Russian Help Fund
for agreeing to pay 10,000 euros for the collection of the donor's
transplant. We now need to raise 5,000 euros to pay for the donor search,
and 2,500 euros for delivery of bone marrow from the collection center in
Europe to St. Petersburg.
Update as of May 12, 2009
Nastia came to St. Petersburg for planned testing. She still lacks money
to pay off her debt to the registry.
Update as of May 25, 2009.
Unfortunately, Nastia has no matching donors at the international
registry. Stefan Morsch registry is preparing a bill for the donor search
that already took place, and we will have to pay this bill. A search
for matching donors for Nastia is now underway at the Russian cord blood
banks.
Update as of June 23, 2009.
Matching cord blood transplant was found for Nastia. She is now undergoing
planned testing at her place of residence. The transplantation was not
yet scheduled.
Update as of July 23, 2009.
Nastia's transplantation was scheduled for September. Her mother
is now trying to get a quota for the procedure and she is
facing some difficulties.
Update as of October 2, 2009.
Nastia was hospitalized at Pediatric Hematology and Transplantology
Institute for testing and treatment. Cord stem transplant is planned for
the mid-October.
Update as of October 22, 2009.
Unfortunately, after the tests at the clinic's labs and additional typing,
the cord blood sample turned out to be not a good match. Transplantation
was canceled. Nastia and her mom returned home. The search for a matching
donor or cord blood will continue.
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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We also need the letter from you with the following data:
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date, signature (seal).
Please use on of the following applications:
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