Help Yura survive

Parents of children with orphan diseases are persistent and ready for anything. Therefore, when we heard tears in the voice of Yuri's mother, it immediately became clear that the situation was serious. Let's tell the story first: from the very birth of Yura Petrenko, any ARVI has always spilled over into severe bronchitis or pneumonia; in the end the antibiotics just stopped working. Mom took her son to Okhmatdit to exclude oncology. There, they found the cause of the problems: an orphan disease, primary immunodeficiency, and prescribed a monthly intake of immunoglobulins. Without them, every cold will become a threat to the life and health of the child.

And in 2019, Yura began to have serious intestinal problems. Again there were examinations and tests, and again a difficult and rare diagnosis: ulcerative colitis, which was later changed to Crohn's disease. In Yura, it is a consequence of immune problems and also requires constant expensive treatment.

Yura is a very kind, active, smart boy. At school he loves labor and singing lessons, attends the chess section, where he makes progress. But his health is constantly under threat. Tens of thousands of hryvnias per month are needed to carry out all the necessary examinations and pay for more and more appointments. The treatment plan is constantly changing: rare diseases are an unpredictable thing; what worked for one patient may not work for another.

A February examination at the Kiev Institute of Pediatrics, Obstetrics and Gynecology revealed new problems: Pseudomonas aeruginosa and low calcium levels. "Pseudomonas aeruginosa" is the scourge of our children with cystic fibrosis, and now Yura will have to fight it. Doctors have developed a whole strategy of war against legal diseases for the coming months.

In addition to a dozen drugs, which the child drank in a short course, Yura was prescribed Kolistin in the form of inhalation for 3 months, Kalcemin and Olidetrim for a whole year. Only one package of Kolistin costs about UAH 6,000 and lasts for 5 days. Pentasa and special meals have not been canceled either. Plus tests for calprotectin, coprogram and a few more tests monthly, once every three months sputum culture... All this is money, money, money. And money is equal to health for Yura. So my mother called us in utter despair.

We are opening a collection for drugs, examinations and medical nutrition. This is enough for about a month and a half. For Victoria, this is a huge amount, but if each of us makes a contribution, then we will help Yura not suffer from pain and nausea and not be afraid of tomorrow – after all, without drugs, the threat to life is completely real. It is necessary to attack diseases according to the doctors' plan and drive them into remission! Let's do it together!