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Egor Linkov, 1–Cystic Fibrosis, Difficult Condition

March 20, 2017, 20:00 5564 Author: Olga Vovk deti.zp.ua Fighting this disease requires lots of money, which I don’t have. I really want to help my son, but cannot!

ЛEgor Linkov, born 12.02.2016

Diagnosis: Cystic Fibrosis.

News about Egor’s treatment

Conclusions: page 1, page 2.

Doctor’s Notes: page 1, page 2.

Recommendation: page 1, page 2.

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Hello! I am a mom of a wonderful boy Egor. He was born on Feb.12, 2016, weighing 4kg, 57cm long, after a c-section during the 41st week of pregnancy. He is a long awaited child because it took me 7 years to get pregnant.

During the first 3 months Egorstruggled with gaining weight: 400 grams during the first month, 50 grams during the second. Now Egor is 6 months old and he weighs 5.2kg. Since May 23, 2016 we’ve been in and out of multiple hospitals, trying to determine the reason for Egor’s low weight. We did a full neurological examination at the Kharkiv children’s hospital No5, but no pathology was discovered. Then Egor was transferred to Kharkiv children’s hospital No16, where he was examined every week. It was also at this hospital that my son had his first blood transfusion due to low hemoglobin.

At the end of May, our pediatrician told us that doctors at the genetics center were now suspecting that Egor had cystic fibrosis. On May 31 and June 2 Egor had 2 tests, which resulted in a 93% certainty reading. On June 8 he was again tested at the specialized medical genetic center; the result was an 86% certainty reading (the norm is 25%).

Finally, on June 10 everything became clear. Egor was formally diagnosed with cystic fibrosis with exocrine pancreatic insufficiency.

Then, more visits to the hospital. First, Egor had bronchitis, then it was discovered that in addition to everything else, he was born with a cytomegalovirus infection, which complicated his condition even further because it negatively affects the liver. And he needs his liver to work well because antibiotics is the main treatment for cystic fibrosis.

It costs a huge amount of money to treat Egor. Just a single full examination cost 600 USD. We spent another 370 USD for treatment (medications are very expensive: 1 bottle of biovenmono costs 28 USD, we needed 3 of those; evrozidim costs 45 USD per bottle, of which we needed 10, etc.). In addition, Egor needs vitamins (kinderbiovitalgel, 7 USD, vitamin E), special nutrition (Humana MCT baby food costs 9 USD and lasts about 2 days, FRISO for prematurely born children costs 10 USD and lasts a day and a half), probiotics (Preema kids costs 11 USD, we need two of those every month, enterogermin is needed daily, each dose costs 1 USD), and medications which he needs to take daily (veroshpiron, panangyn, sumamed, ursofalk, pulmicort, berodual, lazaleks, abaktal).

We spent our last 225 USD during the last treatment course. And now the doctors have prescribed Kolomitsin inhalations, a single pack of this medication costs 170 USD, we don’t have any money left and none of our friends can lend us any more funds.

Egor’s low weight has also impacted his physical condition. He cannot stand up because his legs do not support his weight, his fingers are curled into fists, and his neck is barely able to keep his head up.

In order to administer the medications effectively, we had to buy an inhalator and a device to suck out mucus, because an infant cannot spit the mucus out.

I’m raising Egor on my own. His father left us when Egor was 3 months old. I also have to take care of my mother, who suffered a stroke and is now an invalid. She too needs medications and a lot of attention, twice a year she has to be hospitalized (unfortunately, she missed the last treatment course, and will probably have to miss the next one).

At present I’m on maternity leave, my total monthly income is 125 USD, which consists of 32 USD to take care of a child, 50 USD is a pension for a child-invalid, and 42 USD is my mother’s pension. This is all we have to buy food, pay for utilities and all other expenses. Doing so is almost impossible. We can afford only the most basic food and household goods. Egor’s condition requires additional expenditures on fruit and vegetable purees, juices, dairy, which further complicates our financial situation.

This disease demands significant financial commitments which, unfortunately, we cannot afford.

I would be immensely grateful to everyone who could help me improve my son’s condition.

The family lives in Kharkiv.

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