Ilya is now 19 years old.
He got sick when he was 9. He was diagnosed with a brain tumor, and he had
little time left to live. The tumor was too big. But the neurosurgeons of
the St. Petersburg Children's Regional Hospital did the impossible. They gave
my son a second life. Ilya had two surgeries and a radiation therapy course.
Little by little we got accustomed to the new life which was full of hospitals
and fear of the future.
The surgeries lead to numerous complications related to the endocrine system.
Also, one of Ilya's eyes went blind, and the other one half blind. After the
radiation therapy he could hear twice as bad as before and he also got some
speech disorders. But we continued to live, learn and struggle. 10 years passed.
In June there was another blow. A new and terrible diagnosis: acute lymphoblastic
leukemia. And another death sentence: little time left to live. The bone marrow
is full of cancer cells.
Once again there is this terrible fear that this time this might really be it!
The legs won't walk, the eyes won't see, and everything is like a never ending
nightmare.
At first the doctors refused to admit Ilya to the regional clinical hospital. That
is how bad his condition was. They said that Ilja had so many diseases that
he simply wouldn't survive chemotherapy.
But he did survive! He so longed to live. He had two courses but then the doctors
refused to treat him further.
But we did not give up!
In September we were transferred to the Raisa Gorbacheva Institute of Children's
Hematology and Transplantology. Here's where Ilja got another chemotherapy
course. After that course he felt a lot better. He literally came back to life.
For the first time in a long while we could go outside. He started to read books,
watch TV and show an interest in what is going on around him. We are now waiting
for further treatment but in order to achieve positive results with lymphoblastic
leukemia Ilya will need another 8 chemotherapy courses. That means that we have
to rent a place to live in St. Petersburg for a long time (for a year or even more).
Ilya officially has disability group I. He cannot be left alone as he cannot cope with
some very simple things.
His father left us 10 years ago when Ilja first got sick. He was frightened
of the hardships and the load that our family had to carry.
He did not help us then and he is not helping us now either. Meanwhile we
have to spend lots of money on the so-called ancillary drugs: antibiotics,
antifungals, antiallergic and hormonal drugs which Ilja needs dur to his first
disease and which are not on the list of free drugs for the disabled. So our
pensions (Ilya's and mine) are not enough at all.
I am asking everyone for help. Please help us.
Ilya is all I have. He is my sunshine, he is my happiness, he is my pain, he
is my life.
And he only has one life to live!
Marina Emilievna Kirillova,
Ilya's mother
Home address:
5-microraion d. 25 kv. 28,
187555 Tikhvin,
Leningradskaya oblast
Contact phone:
+7 (911) 736-01-83
Update as of January 12, 2010.
Ilya was in intensive care unit due to paraproctitis and infectious-toxic
shock. We are now discharged for outpatient monitoring and live at the
rented apartment. Ilya walks very little. We signed up for a consultation
with endocrinologist for January 12.
Please help us with buying medications and paying for the tests.
Update as of February 1, 2010.
Ilya had a consultation with endocrinologist, and had CT scan of
adrenal glands scheduled for February 18th. This way the doctors will
be able to better diagnose the reason for the malfunctioning of
endocrine system.
Around the same time, decision regarding autologous
transplantation will be made. Ilya does not feel very well.
He has a hard time recovering after chemotherapy and can barely walk.
Update as of February 21, 2010.
Based on results of CT scan, Ilya's adrenal glands are normal.
He had completed the main course of treatment and lives in a rented
apartment. Once a week he goes for tests. A puncture was scheduled
for Wednesday and if it confirms remission, Ilya will be transferred
to maintenance therapy. He feels better, although it is still
difficult for him to walk.
Kirill's mom needs a consultation from a family law attorney, as for
a long time she has not been receiving alimonies from Ilya's father,
while their financial situation is now extremely difficult.
Update as of April 8, 2010.
Ilya is in remission since the end of February. Once a week he
goes for checkups locally (blood tests) and once a month he
comes to St. Petersburg for examinatons. The next checkup is
scheduled for the end of April.
Ilya stil needs to take many medications: antiviral, antifungal
and for liver support. Our family's financial situation is still
very difficult, as we still don't get alimonies from Ilya's father.
Update as of May 13, 2010.
At the end of April, Ilya underwent tests that confirmed remission.
The next round of tests is scheduled for the end of May.
Ilya's liver indicators are very high and his dose of maintenance
therapy with Purinethol had to be reduced. Heptral in pills did not
help Ilya, so he needs at least 10 ampoules. Please help.
Ilya's mom
Update as of June 3, 2010.
Ilya had another checkup and all is well
with him. The next examination is scheduled for the end of June. He
feels rather well, but he gained extra weight, which is likely due to
endocrine issues.
Ilya's mom
Update as of July 5, 2010.
Two weeks ago, Ilya had seizures and an encephalogram showed new
lesions and seizure readiness. The puncture of cerebrospinal fluid
showed that it is clear of cancer, and Ilya is in bone-marrow remission.
To clarify the nature of the lesions, Ilya needs to undergo MRI next week.
The test costs 3,500 rubles. Ilyusha also needs continuing therapy with
AndroGel. One package that lasts a month costs 3,000 rubles. We will
be very grateful for help.
Ilya's mom
Update as of July 27, 2010.
Ilya is now on maintenance therapy. He needs medications to support his
liver and anti-seizure drugs. Ilya is undergoing planned tests at R.
Gorbacheva Pediatric Hematology & Transplantology Institute. He is
in remission in regards to leukemia. His family is still in a very
difficult financial situation.
Correspondent Bank:
Deutsche Bank Trust Company Americas,
SWIFT: BKTRUS33
Beneficiary Bank:
OJSC Bank Petrovski (f. EEFC Bank Plc.)
SWIFT: PETRRU2P
Account No. 04096265
Beneficiary:
Non-Profit Organization
"AdVita Charitable Foundation",
account # 40703840712001000468
*,**
Correspondent Bank:
Deutsche Bank AG,
SWIFT: DEUTDEFF
Beneficiary Bank:
OJSC Bank Petrovski (f. EEFC Bank Plc.)
SWIFT: PETRRU2P
Account No. 100 9497918 1000
Beneficiary:
Non-Profit Organization
"AdVita Charitable Foundation",
account # 40703978312001000468
*,**
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