Hello!
My name is Yana Zipenkova. I am Sasha Zipenkov's mom. He is 2.5 years old. He is
a very happy, active and lively boy. When he was 16 months old, the ophthalmologists
diagnosed him with two-sided retinoblastoma (tumor on both eyes). We could not save
his left eye; the tumor was too large and the eye was removed. Sasha underwent
chemotherapy. All was going well.
We thought the right eye was cured. However, just seven months later, Sasha had a
relapse. He had numerous lesions in his right eye. We started new therapy. By now we have
completed six chemotherapy courses at pediatric oncology unit of hospital No. 31. We trying
to save Sasha's only remaining eye, where he is already losing his vision. The doctors
recommended us testing on new and expensive equipment that is only available abroad.
Sasha has prosthesis on his left eye. We keep our faith that Sasha will keep his right
eye and get well soon.
Please help us with Sasha's treatment! I will be very grateful for any help.
Yana Zipenkova
Home address:
195298, St. Petersburg
pr. Kosygina d. 28, k. 4, kv. 64
Contact phone:
+7 (906) 277-61-85
Update as of March 18, 2008.
Sasha's condition worsened. After another chemotherapy course he had
high temperature for the last three days. The boy is very fatigued
and does not eat. He had pneumonia.
Sasha's mom does not yet have a bank account in St. Petersburg. Please forward your donations
to AdVita fund's bank account with a note "for Sasha Zipenkov".
Update as of April 10, 2008.
After the chemotherapy Sasha recovered and went to Moscow for the new prosthetic.
Update as of April 12, 2008.
The specialized retinoblastoma clinic in Essen is ready to admit Sasha for
examination and therapy. The bill will be received in the next few days.
Update as of April 18, 2008.
A clinic in Essen is ready to admit Sasha on May 5. Unfortunately, we will not
receive a bill until after the examination. For now, Sasha and his mom need
18,000 rubles for tickets and 200 euros for testing. We are sincerely grateful
to volunteers from St. Petersburg's Parents web forum for quickly raising the
needed amount.
Update as of May 15, 2008.
Sasha was examined and the treatment will start next week. The majority of
the treatment cost will be paid for using the funds raised by Sasha's family.
As of now they lack 800 euros.
Update as of May 25, 2008.
Sasha returned from a clinic in Essen. The control testing showed that his
treatment was successful and there are no lesions. The boy feels well.
Update as of September 8, 2008.
Based on the conclusion by the retinoblastoma specialists in St. Petersburg
and Essen, Sasha needs to undergo planned examinations once every two months
at Retinoblastoma Center in Essen. Only the methods developed at the Center
will allow Sasha keep his vision. On September 27th Sasha needs to go for an
examination and fitting of a prosthetic device. The preliminary cost of the
trip is 2,792 euros. The roundtrip tickets for Sasha and his mom will cost
1,012 euros, the examination – 200 euros, testing – 730 euros, prosthesis –
350 euros, lodging – 250 euros and translator's services – 250 euros.
Sasha will need approximately the same amount every two months, unless he
requires more costly procedures. Please forward your donations to Sasha's
mom's savings account, since our fund does not have an agreement with Essen
clinic and we would not be able to transfer the donations from our bank
account to the clinic. Referral for treatment in Essen
If someone would like to offer Sasha support on a constant basis, please
contact us or Sasha's mom at the phone numbers published on our site.
Update as of September 30, 2008.
Unfortunately, based on the test results, Sasha developed a new lesion. He
received appropriate treatment at the University clinic in Essen. Sasha is
due for a checkup in a month. The final bill for the treatment should be
available in two weeks.
Update as of October 21, 2008.
Sasha was billed 4,000 euros for
the next course of treatment. As of now, thanks to help from charitable
fund Happy World, close to 56,000 rubles was raised. We need to find
the rest of the money by Saturday, as on October 24th Sasha will fly
to the clinic in Essen to continue his treatment.
Update as of October 22, 2008.
Yana, Sasha's mom, is sincerely grateful to Happy World fund that
send 55,000 rubles (corrected amount) for Sasha's treatment. She would
also like to thank our constant supporter Mikhail who donated 90,000 rubles.
The bill for Sasha's treatment was paid on time.
Update as of November 28, 2008.
We are sincerely grateful to our long-term supporter Mikhail who
forwarded us 2,500 euros for Sasha's planned trip to a clinic in Essen.
Sasha's treatment is proceeding well and he feels pretty good.
Update as of December 12, 2008.
Sasha completed planned testing and all the necessary procedures at Uniklinik
of Essen. He is in remission for his main illness. Unfortunately, Sasha
is allergic to the material used to make his prosthesis, so at his next
return trip at the end of January the boy will visit a prosthetics specialist
for selecting a new prosthesis. We are sincerely grateful to RAYAR company
for their continuing support, and Inna personally, for paying for the next
stage of treatment for Sasha.
Update as of March 17, 2009.
Based on the test results, Sasha needs to undergo a course of micro-radiation
on the part of his eye that was found to have a recurrence. The clinic
billed Sasha 4,550 euros.
We are announcing an urgent fundraising for these purposes, but the donations
should be sent either to Sasha's mother's bank account or via
Paypal.
We will not be able to use donations sent to AdVita fund's bank account,
as we do not have an agreement with the clinic.
Update as of March 20, 2009
Sasha's mom urgently had to cover the hospital bill for 4,550 euros, of
which 3,650 euros she had to loan. Yesterday, Sasha had a course of
brachytherapy and tomorrow he will return home for the monitoring by
St. Petersburg's doctors. Sasha will need to come back to the next
course on April 19th. Before then, we need to raise money to cover
Sasha's mom's debt and approximately as much money for the new course.
Update as of April 27, 2009.
Sasha will travel for hospitalization in Germany at the beginning
of May. We are enormously grateful to all his supporters who helped
to raise money for this trip.
Update as of May 25, 2009.
Sasha returned from Germany. He achieved remission and he has no lesions.
He will have to come back for the next examination in six weeks. However,
Sasha suffers from periodic fevers and headaches, the reasons for which
have not yet been determined. The MRI scan showed that he is cancer-free.
Update as of July 1, 2009.
After numerous tests, the infection site was located that involved
periosteum. A few of Sasha's teeth that were causing constant inflammation
were taken out. After that his temperature normalized, and discharge of
pus from his eye and nose stopped. After two weeks, Sasha will again
need to travel to the clinic in Essen for control tests.
Update as of July 15, 2009.
Sasha underwent planned checkup in Essen.
The little boy is doing well. The next checkup is in September.
Update as of September 30, 2009.
Hello! This is Sasha Zipenkov's mom. We
just completed another round of testing at the clinic in Essen. Most of
all, I was afraid of a relapse, like the one Sasha had at the same time last
year.
Thank God, all is well, and we all now feel sure that everything will
be well, because Sasha had no new lesions in the last 6 months. The doctors
told us that the old lesions are dormant. In the future they may reactivate
and then they will have to be frozen by the liquid nitrogen or destroyed by
radiation therapy.
The next test will be in November.
Sasha turned 4. His treating doctor, Dr. Bornfeld told us that he will need
to go for tests every two months until he turns 5, so as not to miss
occurrence of the new lesions or reactivation of the old ones. In the
future, testing will still be needed, but not so often. I am asking for
help with further testing and treatment for Sasha. Every trip costs us
2,000 - 3,000 euros. This amount includes testing, treatment (excluding
radiation), tickets, translator services and lodging expenses. Radiation
therapy that Sasha was administered several times costs 4,000 euros on
average.
At this time, we cannot afford the next trip to Essen clinic in November.
Thank you for the help you provided us previously! It allowed us receiving
treatment at a clinic that can offer real help to my son. Thank you very
much!
Sasha's mom
Update as of October 26, 2009.
Sasha needs to travel to the next hospitalization in Essen.
He needs about 2,000 more euros to pay for the therapy. Sasha
will need to arrive to the clinic on November 18th.
Update as of November 30, 2009.
Sasha returned home after a planned checkup. The doctors consider him to
be in a stable condition. There are no new lesions, and the old ones
are inactive. The prosthesis replacement is planned for the next trip.
We are enormously grateful to all Sasha's supporters whose help allows
him continue treatment in Essen.
Update as of January 12, 2010.
Sasha needs to travel for another planned examination and a course
of treatment at Essen. From the previous trip, his mom has 1,200 euros
left, so she needs additional 1,500 euros. She needs to buy the tickets
this week, otherwise, they will be much more expensive.
Update as of February 3, 2010.
Sasha underwent planned tests and he has no areas accumulating contrast.
For the first time in two long years of traveling to Essen for treatment
and control, the doctors lengthened the time between the control tests
to three months. Sasha and his mom are returning home.
Update as of February 28, 2010.
On Monday Sasha will be hospitalized for an examination. He has serious
health issues: vomiting in the morning and temperature rises. He needs to
be tested to determine the reasons for his feeling unwell.
Update as of March 7, 2010.
Sasha's examination was moved to next week due to technical issues.
Sasha's condition improved somewhat, despite a cold.
He is now taking Anaferon.
Update as of March 23, 2010.
Sasha is undergoing tests. The test results showed high liver indicators,
but ultrasound did not show any pathology. His doctor believes that this
should not cause vomiting. The next week Sasha will have MRI scan. He feels
well now.
In a month, he is scheduled to travel for a checkup to Germany.
Update as of April 15, 2010.
Sasha could not have MRI done because he was sick. During the night
he had a high fever asphyxia, and the ambulance was called. Sasha
had an injection of hormones and vasodilating drugs, his condition
got better but he had a high fever for a few days and had to take
antibiotics. Sasha's mother had to buy an inhaler because Sasha had
great difficulty breathing without it.
The boy was so scared to breathe through the mask: he thought he
was going to get general anesthesia which the boy so fears.
At present Sasha's condition is stable. If all goes right Sasha
and his mother are to go to Germany for an examination in 2 weeks.
The tickets have already been ordered. The money raised for the past
trips should be enough.
Update as of May 19, 2010.
Sasha and his mom returned from Germany recently, where he had planned
checkup. Sasha is doing pretty well, and as his doctor said, he is
half-way on a road to recovery. Based on test results, Sasha still has
a lesion remaining, so he will need to travel to Germany again in September.
In fall, he will need to be tested and see how the lesion behaves.
Then the doctors will decide whether it should be removed. In addition,
Sasha will probably need to have a prosthesis replaced by a new one,
because he is growing. The next trip to Germany, together with the cost
of tickets, will require about 2,000 euros. Sasha's mom is asking for help
with raising this amount. She is very grateful to all Sasha's supporters
for the help with his treatment.
Sasha is feeling rather well right now, although recently he was throwing
up for several days, probably due to a virus. The little boy does not
eat well. In addition, due to chemotherapy side effects, he has many dental
problems. His teeth started to deteriorate and many of them were taken
out. Until recently, he only had six of them left.
Now it seems his milk teeth are falling out, and he just lost another
one, even though he is only 5 years old.
Update as of July 23, 2010.
The next examination in Essen is scheduled for September 14th.
Unfortunately, there is no money to pay for it. Sasha needs 2,000 euros.
We are asking for donations to be sent to Sasha's mother's bank account,
since AdVita fund does not have an agreement with the clinic.
The sooner Sasha gets help, the cheaper the tickets will be for this trip.
Update as of August 4, 2010.
Sasha's mom asked us to thank all their supporters: the amount needed
for Sasha's trip to Germany was raised.
Update as of October 7, 2010.
Sasha returned from another checkup in Germany. All is well. He had tests,
his prosthesis was replaced, and the next examination is scheduled in 3 months.
Update as of March 28, 2011.
Possibility of Sasha's genetic testing in Finland is being discussed
(he has relatives there). He still has issues with prosthesis and
inflammation in his eye. Other than that, he feels well, has appetite
and started gaining weight. Sasha started taking aikido classes and
really likes them. Soon he will participate in his first competition.
Update as of June 7, 2011.
Sasha and his mom will travel to Essen for evaluation on June 27th.
Sasha feels well, but the last few days he had pains in his eye.
The doctors offered to do a study under anesthesia, but it
was decided to get it done in Essen.
Update as of August 22, 2011.
Sasha completed control tests in Essen, and all is well.
Genetic counseling was postponed until November. Sasha was
prescribed eye drops and special exercises, because his eye
apparently does not tolerate direct and bright lights.
Unfortunately, chronic irritation from prosthesis can only
be remedied by ointments, but it cannot be fully
taken care of yet.
Update as of November 12, 2011.
Control tests in Essen are scheduled for December 13th.
There are some issues with the prosthesis: Sasha's eye gets inflamed
all the time and needs constant care. From time to time, Sasha
experiences loss of vision in his other eye.
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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