Hello!
We came here from Cheboksary in Chuvash republic. On December
15, 2007 our daughter Ekaterina was born. She is the only and
long-awaited child in our family. She is now 2 years old.
When she was 16 months old, she was diagnosed with a terrifying
disease: osteopetrosis or marble bone disease. This is a rare
genetic disease. It only manifests itself if both parents carry
defective genes. The disease makes bones denser inside. Then bone
marrow stops producing blood cells. The skull openings close and the
child loses sight, hearing, and then - life.
At birth, Katya had no symptoms of the disease. When she was 2.5
months old, she was diagnosed with hydrocephaly and anemia. For a
year, we did everything to get Katya to feel better, but without
success. Since she was 3 months old, she was often sick with colds.
After she turned 1, she was transferred to Hematology unit with
complaints of low appetite, frequent colds and changes in blood test
results. She was examined at Genetics Center of Chuvash republic.
She underwent DNA diagnostic, which uncovered a gene mutation. This
is how we learned of Katya's diagnosis. This was a huge shock for our
family.
Earlier this disease was considered incurable. The children could
barely live until 3 years of age. But now there is one way to beat
this terrible illness: bone marrow transplantation. This is our only
hope to save our daughter!
So we were referred to R. Gorbacheva Pediatric Hematology &
Transplantology Institute in St. Petersburg. Katya will undergo
haploidentical transplantation of bone marrow (with partial match,
when bone marrow will come from one of her parents). After
transplantation she will need expensive medications (Intraglobin and
Vfend, for example). My husband is the only income earner. I have to
take care of Katya at home. We really need money at this time, because
we need to rent an apartment in St. Petersburg and buy medications for
Katya. Please help us! So much has already been done to save Katya,
but there is still a long way to go. We will be very grateful to
everyone who offers us a helping hand during this journey.
Update as of May 26, 2010.
Katya was taken by ambulance to Children's hospital No.5 due to
worsening of hydrocephaly. Transplantation would not be possible
in her current condition. The neurosurgeons will install a
siphon in her shunt. The cost of the supplies is 45,000 rubles.
Update as of July 1, 2010.
On June 3 Katya underwent surgery to install siphon in the shunt
and drain hematoma. It was successful and the next day Katya returned
to a regular room. On June 11th Katya was transferred for treatment
to Pediatric Oncology Institute and she is now being monitored as an
outpatient. She is starting to walk by herself.
CT scan is planned for July 5th, and its results will help to determine
whether transplantation will be offered. We are enormously grateful
to everyone who has helped!
Katya's mom
Update as of October 24, 2010.
Katya is feeling fine: running, riding her bike (many thanks to Irina
from the Parents of St. Petersburg forum), reciting poems. Once a week
she gets platelet transfusions. We are looking forward to the time when
the bone marrow donor is found.
Svetlana, Katya's mother
Update as of November 26, 2010.
We are sincerely grateful to Russian Help Fund for their guarantee to
cover 10,000 euros of 17,500 euros needed for donor search and delivery
of transplant. We are sincerely grateful all our supporters for their
response. We raised the required amount.
Update as of February 22, 2011.
A donor was found, and transplantation was scheduled for March 22,
although the date was not yet confirmed by the registry. We urgently
need to raise 2,500 euros for delivery of transplant.
Katya feels rather well, but depends on blood transfusions (she
gets two platelet transfusions a week).
Update as of May 3, 2011.
On the 9th day post-transplant, Katya developed fever that lasted
almost three weeks despite therapy with antibiotics and antivirals.
By now, her temperature went back to normal. It has been five
weeks since transplantat, and her blood counts are increasing
gradually (leukocytes are already at 4). She was allowed to
walk down the hall. Intestinal GVHD is suspected (test results
are expected soon). Katya is still receiving blood transfusions.
Unfortunately, she is severely fatigued and cannot walk.
Her parents will be very grateful to personal hygiene supplies
(diapers size 4 or 5, wipes, and disposable bedsheets)
that are needed daily.
Update as of May 20, 2011.
Based on control puncture, Katya's transplant did not engraft.
Further treatment is under discussion. Katya had an ultrasound
that showed fungal infection in her spleen. Katya needs Cancidas
therapy (1 bottle lasts her 2 days). She also still needs diapers,
disposable blankets and wipes.
Update as of June 25, 2011.
Katya is now in hospital getting blood transfusions. She is allergic
to transfusions more often than before. The girl still needs Cansidas.
The second transplantation is scheduled for end of August. Katya's
parents ask for help in buying diapers and health aids.
Update as of July 7, 2011.
Katya is at the hospital as her catheter needs to be re-installed after
she got fever. After the consultation with Prof. Klimko, she was switched
on Vfend from Cancidas.
Update as of July 17, 2011.
Katyusha feels much better. On July 11th we were transferred to day
hospital and we go for antibiotics and hormonal therapy injections
every day. Katya also receives r-mass transfusions weekly and twice
a week she gets platelets. In addition, she takes Vfend and Exjade.
Next week we will be allowed to go home until September, and upon
our return a second transplantation is planned (haploidentical
transplantation from mother). At home Katyusha will be under
monitoring of hematologists. Every day Katya and I go for walks.
She enjoys swings and started walking a little.
Katya's mom
Update as of September 15, 2011.
Katya is now at home, in Cheboksary. She developed fungal pneumonia
and she receives therapy with Cancidas.
Update as of October 10, 2011.
Katya is coming for examinations and consultation about the possible
second transplantation. The girl is feeling fine.
Update as of October 30, 2011.
Katya is now monitored as a day patient. She feels rather well, but
periodically has pain in her spine and has to take painkillers.
Transplantation was not scheduled yet, as Katya is being evaluated.
While in Cheboksary, she received r-mass transfusions once a week, as
well as platelets. Please help us with buying diapers and wipes. Vfend
is also still needed. Thank you very much in advance.
Katya's mom
Update as of November 27, 2011.
Based on CT and MRI, Katya has progression of her disease.
Due to hardening of the bone tissue she has pains in her back.
Repeat transplantation from her mother is planned for right after
the New Year. Katyusha is now taking Exjade and Vfend, and she also
needs transfusions from time to time.
Update as of January 18, 2012.
Katya is at the day patient facility getting blood transfusions.
The doctors are considering the second bone marrow transplantation.
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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