Hello,
my name is Svetlana. I am a mom of three wonderful
girls – Uliana, 9, Taya, 4, and Marusya, who is 11 months old.
When she was 5 months old, Marusya was diagnosed with a terrifying
disease, mucopolysaccharidosis Type I. This is a rare genetic disease,
also known as Hurler syndrome. Being timely diagnosed has given Marusya
a chance to get healthy. Since she was 7 months, Marusya is receiving
a vitally important medication, aldurazyme, and its regular intake
allows her to grow and develop at the level of her peers.
Marusya also has a chance to live a normal healthy life – it's a bone
marrow transplantation. We would really like to stop worrying every
month whether the medication will be available and where to find the
enormous amount of money to buy it. BMT is a chance to Marusya to get
a life that most of us are granted, and some have to suffer to get it.
Maybe those of us who got it from God just need to share a little with
those who were short changed, and this will make our lives richer!
Our family is big and very close. We like skiing and ice skating,
playing badminton, biking and camping. We love reading and go to
Sunday school. And we hope that Marusya will stay with us. That
she will not leave us. That she will live and be well.
Yes, life is unpredictable. Often joys and sorrows come together.
Strangers who were helping us became our close friends.
And my daughters' dad became bored and we let him go.
"Listen!
If stars are shining -
It means someone needs them?
It means, someone wants them to be there?"
Children, like stars, have to be there, they cannot fade away...
Uliana was given a piggy bank to save up for the trip to the seaside.
She was keeping 10-ruble coins for a while and it amounted to an
impressive figure. And the adults' talks about Marusya's illness,
lack of money, expensive medication and a donor search have not come
unnoticed. Once she came to me and said: "Mom, I don't want to
save up for the seaside trip anymore. I want to save for Marusya's
operation." I agreed with her. I did not want to halt my
daughter's impulse to forego her vacation for her sister's sake
and tell her that her 2,000-3,000 rubles are a drop in the bucket
compared to 15,000 euros that are needed to pay for the donor
search at the International registry and that additional 2,500 euros
will be needed to deliver transplant to Russia. Fortunately, Russian
Help Fund will raise 10,000 euros for us, but even remaining amount
of 7,500 euros is out of reach for us, and that's why we would like
to ask AdVita fund supporters to help us.
Lately, I was told often that I am very strong. That is not true.
WE are strong.
Svetlana Li, Marusya's mom
Home address:
Vsevolzhsk, Leningradskaya obl,
ul. Magistralnaya, d. 10, kv.41.
Contact phone:
+7 (911) 976-77-11
Update as of September 16, 2011.
We are sincerely grateful to Russian Help Fund for agreeing
to pay 10,000 euros for collection of donor’s transplant material.
Therefore, we urgently need to raise 5,000 euros for the donor search
and 2,500 euros for delivery of transplant.
Update as of December 25, 2011.
Marusya feels well and receives replacement therapy with Aldurazyme. There were
interruptions of drug delivery to state orders, and Marusya parents had to buy it
themselves. She now has enough medication to last until end of January, and there
is hope it will again be available for free. A donor search is ongoing.
Update as of February 8, 2012.
Aldurazyme, a medication that Marusya vitally needs, is now subject of
re-registration and it will not be available in Russia at least until March.
Neither doctors nor patients were forewarned. We were able to find and buy 3
bottles of Aldurazyme for injection next week, but there will be no medication
available in the country afterwards.
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
*,**
* - Please specify your name and how we can keep in touch with you.
We also need the letter from you with the following data:
your full name (name of organization), address, phone (fax), goal of donation,
date, signature (seal).
Please use on of the following applications:
in russian,
in english,
in german.
** - If money amount are transfered by the third party we kindly
ask you to show in the letter which firm would transfer the sum of
money (by our request money transfer would be performed by firm....
If you would like to transfer money through Western Union, please contact
site administrator.
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keep in touch with site administrator.
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and write your name, or company name, payment number, time and place of money transfer.
This information will help us to account for money collection and inform you about every
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sure that every donation reaches its intended recipient.
