Vika Prokopenko is only two years old, but she has already undergone three complex surgeries, clinical death, and intensive care. The child was diagnosed with — congenital combined (T- and B-cell) immunodeficiency with immunodysregulation. This is a rare genetic disorder.
Children with a diagnosis like Vika's live no more than 1-2 years without treatment. The only chance of saving Vika's life is a bone marrow transplant. The cost of the transplant and the preparatory treatment — is 186 685 euros. One private foundation from Austria, on condition that the operation is carried out in that country, has given a letter of guarantee for 80 000 euros. The rest of the money has to be raised by 7 July 2013.
Immediately after birth, the girl felt well, with an Apgar score of 8 (the Apgar score is a rapid assessment system for newborns). In — most newborns, the Apgar score is 1 minutes after birth, according to 7-8 . At month, the baby received the BCG vaccine (a Danish vaccine), and after some time, her body gradually began to malfunction. At the vaccination site, an ulcer developed and suppurated.
Vika was referred for an X-ray and a consultation with a TB specialist, who prescribed an anti-TB drug. After liver function tests, — she was referred to the hospital with suspected hepatitis. While undergoing antibiotic treatment, she developed loose stools and a rash all over her body. She began to lose significant weight. Vika and her mother were admitted to the Odessa City Children's Clinical Hospital No. 1 named after Academician B. Ya. Reznik with a swollen abdomen and very poor blood counts. At the hospital, the child was prescribed prednisolone and dexamethasone injections, and IVs with rheosorbilact and glucose. The girl began to recover, standing on her feet, but her test results were still abnormal within normal limits. Doctors warned that further examination and determination of the cause of these abnormal results were necessary.
After prolonged treatment, Vika began to show weakness and lethargy, becoming even more pale, depressed, and cranky. The immunologist prescribed a series of tests, and after — antiviral therapy and suppositories. After these medications, the child's temperature rose, and the girl was admitted to the cardiorheumatology department. After the therapy, the child began to feel somewhat better, and Vika and her mother were sent home.
At home, the child's fever rose again, and nothing could bring it down. So the girl ended up back at the Regional Children's Hospital, in the same department, but with a cardiorheumatologist. The results were even more shocking: hemoglobin — 40, ESR — 80, the child was terribly pale and lethargic. The doctors recommended a sternal puncture, and according to the results, the bone marrow was not functioning properly. Vika was transferred to the oncohematology department, where they performed a second puncture and sent her to Kyiv for a more precise diagnosis. The results were encouraging: the bone marrow had grown a new growth, but there was not enough blood in the blood, and she needed a blood transfusion. There were not enough cells in the blood, and she needed a blood transfusion.
After the blood transfusion, the child's tummy swelled even more, and the child was transferred to the intensive care unit. They performed surgery, during which it was discovered that Vika «the intestines had rotted» 50 . Afterward, the intensive care team fought for Vika's life. Gradually, her blood counts began to rise and the baby was transferred to the surgical department, but the axillary lymph node under the vaccination site soon swelled. Vika was referred to the Odessa Regional Tuberculosis Dispensary for examination. After the examination, — anti-tuberculosis treatment was prescribed, otherwise the BCG would spread to her entire body. It was recommended to urgently go to Kyiv. At the Kyiv clinic «Okhmadet» the girl underwent a second surgery.
The doctors concluded: Sepsis. Primary combined immunodeficiency. Complicated BCG vaccination in the form of an ulcer on the left shoulder.
The parents with the child returned to Odessa and continued treatment at the Regional Children's Clinical Hospital. Between 6 and 7 February 2013 the baby suffered clinical death, which lasted 20 minutes. It's hard to describe what little Vika's parents had to endure, but they didn't give up, fought for their girl's life, and searched for clinics that could help their child. They contacted the State Institution «Republican Scientific and Practical Center for Pediatric Oncology, Hematology, and Immunology» Ministry of Health of the Republic of Belarus, where a third operation was performed and a final diagnosis was made: Combined (T- and B-cell) immunodeficiency with immunodysregulation. A panel of doctors prescribed BMT.
As of the child, after an examination and preparatory treatment conducted at the Children's Oncology Center of the Republic of Belarus, is currently in Odessa in the oncohematology department of the Regional Children's Clinical Hospital at address: Ak. Vorobyova St., 3.
The terrifying reality — the child's life directly depends on a huge pile of money! Vika's parents simply don't have that kind of money and they have nowhere to get it! Vika's parents are turning to all kind and compassionate people for help and thank everyone who participated in saving the life of their daughter. All their efforts are focused on fundraising, but, unfortunately without the help of caring, kind people, they cannot cope.
Vika's parents believe that there are many such people and together we can help the child! We will be very grateful for the assistance provided.
Thank you to the advertising agency «Beaumonde» for their ongoing assistance in placing social advertising. Since 1 May 2013 in Odessa, billboards have been installed with information about Vika.
30 March 2015
Unfortunately, the situation around helping Vika Prokopenko began to develop in a way that had nothing to do with the principles of charity and of observing the law. We therefore consider it our duty, in order to prevent any insinuations, to explain once again, now on the child's own page, to our voluntary helpers and to everyone who did not stand aside and donated money for the recovery of Vika and of other children, what in fact happened:
When we started preparing the documents for transferring the money raised for Vika's treatment to the clinic in Austria, it turned out that the child's father, Ivan Pronin, for some reason could not produce reports on the parallel collections, was concealing the sums raised and was doing everything to prevent the money being transferred to the clinic's account. Under pressure from the public and from the volunteers who had helped collect money into the account of the father, Ivan Pronin, he had to pay the bill for the bone marrow transplant at the St. Anna clinic (Austria) in full out of the funds of the donors who had transferred money to the account of Viktoriia Prokopenko's parents.
The funds, amounting to 394353,28 UAH (including 173257,00 UAH raised at the Ukrainian Charity Exchange and 138647,28 UAH from the volunteer Olha Surovtseva, Russia), which had come into the account of the Little Bee Charitable Foundation for the treatment of Viktoriia Prokopenko, could not be transferred to the clinic's account, because the father constantly obstructed this and tried to obtain the money on his personal card.
The work of the Little Bee foundation is completely transparent, and we cannot betray the trust of our donors or cover up dishonest parents who use their child's illness for personal gain.
On 9 October 2013 the staff of the Ukrainian Charity Exchange decided to transfer the funds of 173257,00 UAH, raised on their own charity platform, to the account of a clinic in Belarus for Viktoriia Prokopenko. Of that, 83 128,50 kop. was spent on the child's treatment.
The funds that had been collected for Viktoriia Prokopenko and remained in the foundation's account were, by decision of the foundation's board, passed on to other seriously ill children. A notice about this was published in the newspaper of the Odesa City Council, "Odeskyi visnyk" No.44(5292) of 9 November 2013, p. 19. The same notice was published in the foundation's official group.
All our actions were completely legal, as confirmed by the court decision we were forced to appeal to protect our good name.
Due to the fact that the foundation "Little Bee" filed a lawsuit against Ivan Pronin, the unused UBB funds remaining in the Belarusian clinic's account could not be withdrawn until the trial was completed. The remaining amount will soon be returned to the foundation's account "Little Bee" and transferred to the treatment of Igor Gordeev, who needs an urgent kidney transplant from an unrelated donor.
20 July 2013
Yesterday, after Ivan failed to come to the office at our invitation, and only Vika's grandmother and aunt were present, we took a different approach.
We went to the head physician of the Regional Children's Clinical Hospital and asked for help in finding out what was happening to the girl. We needed to get information about the child's health firsthand, from the attending physician in Belarus, and for this information to be provided by the doctors in the department where Vika was being treated. Since we couldn't reach the attending physician, we had to call Olga Vitalievna Aleynikova, director of the State Institution "Republican Scientific and Practical Center for Pediatric Oncology and Hematology». She explained that Vika had undergone two rounds of anti-relapse therapy, and as soon as her health allowed, they would prepare her for BMT. When we asked: "Where will the BMT be performed?", she said at their place. And when I learned that the money had already been paid to the clinic in Austria, I was, to put it mildly, shocked by this message, as the baby's father had said he was looking for funds for BMT in Belarus.
Then we were transferred to the billing department to inquire about the financial details. We agreed that they would send us a contract, and if necessary, we could pay Vika's treatment costs directly to the clinic.
Here's the letter:
Good afternoon. We are sending you a sample contract and invoice. If everything is satisfactory, we will sign, scan, and send it for your signature. The contract and invoice amount is specified for a specific transfer.
Yes, they need an unrelated transplant. This is the only treatment option. However, BMT is currently impossible due to the expensive treatment (costly antibiotics) for BCG infection. It is currently impossible to say how long it will take and how much it will cost. Everything depends on how the child responds to the treatment. As of 10.07.2013 they have no debt, but they are only in the black 2 000 dollars. This is very little. The money will only last for days 7-10. In any case, if you send a larger sum of money and we keep it, we will refund you the entire balance.
17 July 2013
Latest update from Vika's father, Ivan Pronin. The full cost of the operation is 180 €1,000, but the clinic only billed 100 €1,000, since the Austrian Charity Fund is covering 80 €1,000. As of today, Ivan has transferred 67 €1,000, collected from other sources, to the Austrian clinic's account to pay for the BMT. The remaining amount of 33 €1,000 is being covered by the German charity "Ein Herz für Kinder". A letter of guarantee for 20 €1,000 is already available, and a letter for the remaining amount is pending. Since the funds for Vika Prokopenko's BMT were raised from other sources (a German foundation, an Austrian foundation, and funds deposited into the girl's father's personal bank accounts), the actual amount of funds raised and the need to pay for additional treatment are currently being clarified.
Since 14 April 2013 Vika has been in Odessa in the oncohematology department, ward «Platelets». Since 17 February 2013 Vika has been receiving treatment at the "Republican Scientific and Practical Center for Pediatric Oncology, Hematology, and Immunology". During treatment doctors noticed that the girl's tummy was enlarged. They assumed it was just bloating. But surgery was necessary.
Post-operative diagnosis: PID, combined. SIRS. POI. Total anaerobic colitis. Pneumomesentery. Multiple (micro?) perforations of the colon. Serous peritonitis. Pneumoperitoneum.
Here's what Vika's dad writes about how the girl tolerated the surgery:
It doesn't hurt when they administer anesthesia. Vika sensed something beforehand, although she behaved calmly, though she sometimes went to her mother's arms, sometimes to me. She spent a little time here and there. She showed me everything. «vava» and put her hand on my tummy. Then they gave her the anesthesia, it didn't last long, but she still clung to me.
She came to, and after a long, medicated sleep, they let us in to see her, one by one. As I walked in, she looked at me and — thought: «they're going to pick her up now!» And her look seemed to say: «It's not my fault this time!».
At that moment, all the machines started beeping and blood started flowing through the tubes, and her blood pressure rose. But she can't move, and she can't scream or speak. And she can't cling to me at all, her arms are tied. And she's trying to push the blanket off with her legs, or just stick her leg out. And then she turned her head to the side and the tears started flowing. Out of despair, they won't take her. That's not the saddest thing, what's worse is when you go to her, she looks at you, understands and recognizes you, but turns away and lies there, looking the other way, very offended. She doesn't cry, doesn't moan, just looks somewhere off to the side.
And when you leave — he starts crying right away: «Don't go»
