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The little boys’ birthdays: April 05, 2009.
Diagnosis: chronical myeloleukemia, juvenile form Myelodisplastic syndrome.
Maxim is taking his treatment course in Italy and still needs your kind support! Unfortunately, one of the brothers, Denis failed two bone marrow transplants, passed away on the 3rd of January 2013.
The two medical record extracts look identical like the twins do. The difference lies only in two words - in the names of the patients. One reads “Denis” and the other “Maxim”. They are twins, being two years of age each. Both have blast-type cells in their blood and in the bone marrow. Diagnostics of such illnesses is very complicated.
Is it possible to describe and to feel the pain and desperation of the children’s mother?
I’d like you to read the following letter from the beginning to the end, to the last stop.
We are starting to collec funds for the boys’ treatment simply because their life depends on each of us. Neither the children’s no their parents have fault in this. But there’s our duty: both civil and human.
So it’s not loud words, it’s a call to start working.
Natasha Makieva’s letter (the boys’ mother)
In November (06/11/2010) we called for an ambulance because Denis had swollen abdomen and was running a temperature (37,6C). We were hospitalized in the surgery department. Having excluded appendicitis and intestinal obstruction the doctors made an extensive blood test. Blast-type cells were detected. A day later (08/11/2010) the boy was subjected to the ultrasonic inspection of the abdominal cavity, X-ray of the lungs and additional blood tests.
As early as the November the 9th the boy was taken in an ambulance to the hematology department of the Zaporozhye regional children’s hospital with the preliminary diagnosis saying “Systematic blood disease, anemia of uncertain etiology:” Again, blood tests and abdominal cavity X-ray were made (which showed a significant increase in the liver and spleen sizes). The diagnosis “Acute leukemia” followed. To confirm this, a sternal puncture of the bone marrow was made. When I told the hematologist that I had Denis’s twin brother at home I was told that it was necessary to bring him for examination, too. Thus Maxim was also accepted for examination at the Zaporozhye regional children’s hospital on the 11th of November; blast-type cells were detected in his blood, too.
A sternal puncture was scheduled for the 15th of November for Maxim. But on the previous day, November the 14th, both boys together in a grave condition were transferred from hematology to the regional isolation hospital because their temperature reached 39C, they were vomiting and had diarrhea. The diagnosis was “rotavirus infection”. We stayed there for two weeks and did not get any treatment in the direct illness. Maxim’s puncture was made in the isolation hospital and my husband took it to Kiev but the “Acute leukemia” diagnosis was not confirmed because of insufficient number of blast-type cells. We were recommended to undergo a repeated puncture after the rotavirus infection treatment.
On the 24th of November we were transferred back to the hematology department and on the 30th of November the following punctures were taken from both boys. During the entire time we didn’t get any treatment in the direct disease. Instead, after two narcoses Maxim who has hydrocephaly started to suffer from nervous attacks. Quieting medications were prescribed for the small boy after which he was falling to sleep even at the table with the spoon in his mouth. When I turned to the doctors the dose was decreased. Both boys developed secondary myocardium with liquid in the heart cavities! At the same time, staying in the hospital the children fell ill again with obstructive bronchitis.
On the 8th of December we were transferred from hematology to a box in the diagnostic section of the isolation department. Again we had two weeks of successful bronchitis treatment.
Thus, staying in the hospital, the boys two times fell ill with associated diseases and were discharged from the hospital with innocent diagnosis of asiderotic anemia to Berdyansk for further monitoring.
So we went away as we were: with swollen abdomens and blast-type cells in the boys’ blood and bone marrow.
Having come to Berdyansk we had tests and were examined by the doctor each week. Naturally, the doctors were indignant with the diagnosis with which the boys had been discharged from the hospital.
I turned to the Berdyansk fund called “Families with many children” (because we are a family with many children). The fund chairman Oleg Shelest and Stanislav Skorohod met the head of the city health department. He gave an order (after he saw our analyses, USI and other examination results) to issue us a direction to "Ochmadet". But having made a call to Kiev I learned that we needed a direction from the treating doctor, from the Zaporozhye hematologist. With the help of our folk deputy V. Baranov who called the regional health department we were again taken to the regional hospital in Zaporozhye.
Anyway, from there two weeks later we were forwarded to “Ochmadet” to a box in the diagnostic department for specification of our diagnosis which read “chronic myeloleukemia, juvenile form? Myelodysplastic syndrome?”
We’ve been in “Ochmadet” since 03/02/2011. Here again the boys caught some infection again, were running a temperature, vomiting and had diarrhea. Hypostases started. Strong antibiotics were prescribed together with iron medications and diuretics.
A week later the boys were out of this condition. The hematologists prescribed us "Equoral" and hormone therapy.
At present, an Italian clinic has agreed to take the boys for examination.
20 thousand USD are urgently needed
Natalia’s (mother) telephone: (050) 056-46-51
Volunteer: Yulia Nogovytsyna +38 (050) 628 18 07
To obtain additional information you can always address the staff of the Happy Child foundation.
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