Hello,
I am a mother of a sick daughter, and I am hoping for your kindness and
responsiveness. People say that you cannot buy health, but in our case,
we could at least try to do that. Everyone has close people and relatives,
and I hope you will understand my grief and despair. A terrible thing
happened: my oldest daughter Tatiana got sick.
For a year she was on treatment at Hematology Research Center of Russian
Science Academy in Moscow. For three months, the doctors could not
diagnose her. Finally, it was determined: myelodysplastic syndrome.
Several courses of chemotherapy were ineffective, so the possibility of
bone marrow transplantation was raised. My youngest daughter was examined,
but she did not match as a bone marrow donor. The search for an unrelated
donor was initiated by R. Gorbacheva Institute of Hematology and
Transplantology at Stefan Morsch registry in Germany.
A donor was found, and bone marrow transplantation took place. However,
the post-transplant period had lasted four months already. All this time
Tatiana needed expensive medications (such as Vfend). We also need
to rent an apartment in St. Petersburg. We have no money at all – I
am the only one who takes care of my daughters and my husband who had
two surgeries on his spine in 2008. You are our last hope. Please help!
Update as of July 15, 2010.
During last week, Tatiana's condition has not changed much.
She still has skin GVHD, but in general her condition is normal.
On July 15th she was tested, but the results are not known yet.
We do not notice improvement yet. Tatiana was not prescribed hormones,
which is good news, according to her doctor.
Igor Roslyakov, Tatiana's husband
Update as of September 22, 2010.
Tatiana is now monitored as an outpatient. GVHD is controlled with
hormonal therapy. She also takes Vfend and Zometa for aseptic necrosis
of joints. She feels relatively well.
Update as of October 30, 2010.
My daughter feels worse: her cough returned, and fungal infection lesions
remain, so she is continuing therapy with Vfend and Pulmozyme. After cancellation
of hormonal therapy and immunosuppressive drugs, GVHD of skin reactivated.
Poolotherapy was scheduled for November 8th. Tatiana recently got severe abdominal
pain and was hospitalized yesterday.
Tatiana's mom
Update as of December 22, 2010.
Tatiana's titer of CMV increased and she was prescribed Cymevene.
She has mild intestinal GVHD symptoms. After control CT scan, it
was decided to continue Vfend therapy.
Update as of December 24, 2010.
I want to express a tremendous gratitude to Advita fund and all volunteers.
The news that my daughter got sick was a great shock to us. During the
last two years we are undergoing treatments in R.M. Gorbacheva Institute of
Pediatric Hematology and Transplantation.
There is a saying that money do not buy health, but sometimes it is not so!
We, patient's relatives, would not be able to cope without Advita.
As soon as you come in, you are greeted by the very kind, sensitive
and compassionate people. All of us who came from different cities
and taken by destiny far away from home, found second home in Advita,
and know that we can always be heard and helped.
I am very grateful to Natalia Temnikova: when we call her and tell about
a new prescription she already knows the dosage and duration of
the treatment. She never forgets! Thank you so much, Natashen'ka!
Probably I don’t know all volunteers and could miss someone. I would
like to mention Masha Slavianskaya, Ira Semenova and Natasha Zeida.
These are the volunteers we are in contact with, but at the same
time they are part of the organization that helped us to survive.
Also I am very grateful to the donors! I wish health to you and
all your loved ones!
Valentina Danilovna,
Tatiana's mother
Update as of February 8, 2011.
Tatiana is currently at Municipal Hospital No. 40 in Moscow.
She has worsening of hepatitis, most likely of toxic or mechanical
nature. Overall, she feels OK. .
