Hello,
I am Arina Baboshina's mom. My name is Lena. Arina is only 9 months old.
She was born on June 1, 2009, on International Children's Day.
She was a long-awaited child and we were very excited to meet her.
Since birth, Arina had low hemoglobin. We took her for an examination
at the Regional hospital several times, but the diagnosis was never
determined. In December 2009, Arina was finally diagnosed in St.
Petersburg: myelodysplastic syndrome, plus another very rare genetic
disease related to pancreatic function.
Because of this, Arina does not eat well and weighs only 7 kg at 9
months of age. The only chance to save Arina is for her to
receive a bone marrow transplant. Unfortunately, the search results
at the International registry showed that she has no matching
donors and transplant will have to come from the parents.
In our family only Arina's father works, and unfortunately, we
cannot afford to pay for the transplant. We spend a lot of money
for nutrition for Arina (NAN formula and formula with fruit)
and diapers (for 4-9 kg). We will also have to pay for travel
and living expenses in St. Petersburg, and we may need to pay
for post-operation treatment.
This is why we are asking you for help. Please help us save our
little girl. Arina is a happy, lively and bright girl, and
for now she does not know what is happening with her and what she
still has to go through.
We are very hopeful for your help and will fight for our girl
with all our might.
Update as of May 19, 2010.
Arina is now at a rented apartment. She is preparing for transplantation.
We are sincerely grateful to Russian Help Fund for deciding to raise funds
for Arina for a cylinder for cleaning of the donor's transplant. Arina
was prescribed Vfend, 100 mg daily.
Update as of July 1, 2010.
Due to aspergillosis infection, transplantation was postponed.
Arina is taking Vfend. Based on puncture results, there is no process
escalation, but Arina needs frequent blood transfusions. She feels
well and is being monitored as an outpatient.
Update as of October 6, 2010.
Aspergillosis infection was successfully treated and the haploidentical
transplantation from the father is planned for next week. The equipment was
paid for by Russian Help fund. Vfend would be stopped during the transplantation
and recovery and reinstated after the procedure to avoid a recurrence of aspergillosis.
Update as of November 3, 2010.
Transplantation of bone marrow from Arina's father took place on October 19th.
It has been two weeks, and her blood counts are growing gradually.
Arisha tolerated chemotherapy well, but after antibiotics she has been
having intestinal distress. Other than that she feels rather well.
Update as of November 14, 2010.
Arina's intestinal issues were taken under control. She now takes
immunosuppressive medications (Cyclosporine syrup). Due to recently
discovered cytomegalovirus infection, she was prescribed Cymevene.
Arisha feels rather well.
Update as of December 9, 2010.
It has been 50 days since bone marrow transplantation. Control puncture showed full
engraftment of transplant. Arina receives immunosuppressive therapy (hormones and
Cyclosporine). She started to eat much better. There are no signs of GVHD. Arina's CMV
infection was treated and she was taken off Cymevene.
Update as of December 29, 2010.
Arina is in the hospital; she has an
elevated CMV titer and receives Cymevene injections. Thank you to all
donors, blood donors, volunteers who help us. Happy New Year to
everyone!
Arina's mother
Update as of March 22, 2011.
Blood counts are low, and donor's bone marrow fell below 20%.
Repeat transplant is under discussion. Since Arina does not walk,
she needs diapers for 7-18 kg weight.
Arina's mom
Update as of March 17, 2011.
Arisha developed hypo-function of transplant due to cytomegalovirus infection.
Now, after treatment, she no longer has CMV titer. Arina still has myopathy
signs. Further treatment is under discussion.
Update as of May 3, 2011.
Arina is undergoing therapy with Exjade that will remove excess iron
that accumulated in her body due to frequent blood transfusions.
She is planned to undergo second bone marrow transplantation.
Update as of May 20, 2011.
Second transplantation is being planned for the end of summer.
Arisha's leukocyte count increased, but she still needs platelet transfusions.
Her doctors are planning to let Arisha go home so she could rest and regain
her strength. Arisha will be monitored and transfused in Archangelsk Children's
Clinical hospital.
Update as of June 25, 2011.
The doctors have decided to have Arina under their control
the whole summer, until the second transplantation. The puncture
showed there are no blasts.
My daughter constantly needs blood transfusions but she's feeling
all right. She is resting, going for walks and recovering.
Arina's mother
Update as of July 20, 2011.
The doctors are allowing Arisha and her parents to visit
home for a month. She will come back in mid-August.
Update as of September 15, 2011.
Arina is at home and feels well. Her blood counts are normal. During
her stay at home she never needed blood transfusions. It was decided
to postpone planned tests to October. Noxafil is still needed.
Update as of October 31, 2011.
Arisha and her mom came to St. Petersburg. Arina feels well
and has no blasts. It was decided to perform haploidentical
transplantation from her mom.
Update as of November 27, 2011.
After numerous consultations with specialists from different clinics,
it was decided to perform repeat transplantation from Arina's father,
but with a different set of cells. Transplantation is planned for January.
Arisha feels well. Although her blood counts are low, she is not yet
receiving blood transfusions. She still needs Noxafil (a bottle
for 25 days) and Exjade.
Update as of January 18, 2012.
Arina is now at the day patient facility, the date of the transplantation
has not been chosen yet. She is feeling ok. The girl still needs Noxafil.
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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