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Zarina Ermolenko, born 01.02.2008
Diagnosis: Cystic Fibrosis with pancreatic deficiency.
Together with the happy and bright event of the daughter’s birth the great sorrow also came to Ermolenko family. Elena, Zarina’s mother shares the life of her family:
“Zarina was immediately taken to the 5th city hospital of Zaporozhzhye from the maternity department with suspicion of bowel obstruction, on her second day of life the operation on colostomy application was conducted. At the age of 3 months the operation on stoma closure was conducted. Since then the daughter was subjected to 3 operations already.
Cystic fibrosis was diagnosed after the genetic test during the first month of Zarinka’s life. From the very birth we struggle for life. Against a background of the main disease severe course, we got the biliary cirrhosis evolved.
The whole our life is an endless chain of droppers, injections, everyday inhalations and medicines taking. The exhausting cough and bowel pains are our concomitants. Every time interval between exacerbations is great happiness for all the family.
The duration of the “Happiness” period greatly depends on the effective therapy by the appropriate medicines, special diet, massages, and kinesitherapy.
Due to the state of health our girl doesn’t attend school, she studies at home. We are very grateful to the teachers, giving knowledge to our daughter! For Zarina this is a ray of light, which she is striving for. Our girl is eager to get as much information as possible, to open up the unexplored. Her biggest dream is to go to school like other children. The daughter likes drawing very much, but, alas, she cannot attend hobby groups. Any infection from outside ends up with exacerbation.
Zarina is very curious and finds all the necessary information from various sources, such as the Internet, cartoons and communication. For example, after watching the cartoon “Barbie- musketeers”, Zarina locked in her room, came out with a self-made epee, and started fencing. Also after watching “Star wars” Zarina became a Jedi and fought with the world evil with the help of a sword in the form of the stick, found on Khortitsa island. She masters drawing by watching Internet lessons, as well as different types of wicker-work.”
The family tries to provide Zarina with medicines as much as possible, but there is only the father who works. Grandparents also help with everything they can, but unfortunately these resources are not enough. Our state still doesn’t supply children with medicines which are vitally essential for them.
As of today the child constantly needs the expensive medicines: “Ursofalk”, “Colomycin”, “Berodual”, “Fluimucil”, “Pulmozim”, “ACC”, polyvitamins, medicines, supporting heart because of the constant oxygen deficit, special nutrition for weight gaining and a new inhaler for the best delivery of the medicines to the lungs. Monthly 9 000 hryvnyas or 360 US dollars is necessary for Zarinka’s treatment. The child’s relatives implore for help, unfortunately they cannot cope with the trouble themselves.
The family lives in Zaporozhzhye.
Telephone of the mother, Elena Victorovna +38 050 486 66 28.
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