Olga Pavlenko, born in 2002, high degree cystic fibrosis
Olga knows all about the day-to-day taking medicines schedule and vital inhalations, she abides and keeps doing. She has additional pills arranged in sets for morning, afternoon, evening (in case if it gets worse)
Olga Pavlenko was born 11.07.2002
Diagnosis: High degree cystic fibrosis.
I am Pavlenko Irina Sergeevna, mother of a girl diagnosed with severe case of cystic fibrosis. I want to tell you a bit about our life, and how do we cope with our problems, and how hard it was for us to fight for our daughter's life all those years.
My daughter Olya is 14 years old, she's good, frail, lively girl. She has a lot of friends and tries to see them frequently. Some friends come to see her at the hospital to support her. She does not like speaking about thedisease and tries to live like all the healthy people, enjoyingthe life.
Olyushka likes reading, drawing, creation, sports and dancing (sometimes the dancing is hard for her, she hardly breaths sometimes and feels dizzy, but she catches her breath and returns to the dancing room to continue with the lesson). Now, we go to the gym together, just she and me, the coaches there help her to develop the chest andto breathe properly engaging in cardio exercises, and that is very important for us. She likes vacations, especially she is fun of going tothe sea side with family, the salty air helps a lot the respiration and excreting the phlegm from the lungs. Olia attended a regular nursery school, now she is on her 9th year of studies at an ordinary school and she dreams about applying to medical school and, after graduating, to Medical Academy to become a doctor in the future and help same children as she is. Olya has a brother of 5 years old, thank God he is in good health, Olya loves him and he loves her as well.
Olga knows all about the day-to-day taking medicines schedule and vital inhalations, she abides and keeps doing. She has additional pills arranged in sets for morning, afternoon, evening (in case if it gets worse). All the mornings before school, she makes systematically a number of inhalations, only after that she goes to school.
But, unfortunately, our life is not as good as we would like it to be. Olia needs constant therapy, as far as she isgetting older, more medications are prescribed to prolong her life. As her condition worsens, every three months we have to receive cardio-pulmonary treatment at the Children's Hospital 2. Thecoughing increases, phlegm is departed harder, she coughs constantly. In order to bring her out of this state we must apply for treatment at the special hospital where she will receive such expensive antibiotics as Meropenem, Ceftazidime, Amikacinand others that she is sensitive to them), also we always take Pancreatin, Acetylcysteine to liquefy mucus, and a hypertonic solution for inhalation, drugs for the digestive tract, liver and gall bladder. There is another medication that is very important for us and it is very expencive, this is Dornase Alfa that we cannot afford to buy, as well as vitamins, cardiac medications and much more....
Unfortunately, people with disabilities are not protected in our country, and parents of such childrenhave to write letters to different institutions to appeal for help, particularly to charitable funds, usually a fund is the only from where the assistance comes. Good people who care are our only hope... Unfortunately, we have nobody of our family who can help, my husband is the only one who works, my family is just my mother who is a retiree and she has just her pension.
Here is a story about how all our challenges began. When Olya was born, nobody could even imagine that our family will have this challenge. Our problems started already in the maternity hospital, she was not gaining weight, she didn’t eat properly, and we were admitted to leave for home. Since 3 months of life we had endless bronchitis and after 9-th months theydid us a bronchoscopy, but cystic fibrosis diagnosis was concluded when Olia was already 2 years old. In the age of 1.5 years shewas taken by the Intensive Care Unit with pneumonia and she could not breathe herself without oxygen, she were laying down under special oxygen tent for babies during five days, and every day thereI tried to keep away the thought of losing her. The doctors didn't make any prognosis, ‘Just pray’, they said. All the mornings I attended church, I fell down on my knees and prayed for her, I went to the hospital after that with the hope that everything would be ok.
On the 5-th day of intensive care doctor came out and said that she started to breathe herself, and we understood that Olechka is strong, she clung to her life, and she will live against all odds. A couple of days later we were transferred to a separate room, where we taught walking again, because she was so weak that she could not stand on her legs. Once we got better we were transferred to the Children`s Hospital 2, where we were diagnosed with cystic fibrosis, and the proper treatment started. Now, to keep her condition stablewe receive planned treatment 3-4 times per year, without no doubt. But if no help,it is very hard for us to buy medications, we must to contact banks for loans, orwe borrow from people who we don’t know. One such treatment of 14-21 day costs from 380 to 580 USD, that we are not able to stand on, but we don't lose heart and do everything we can do.
Every year of our daughter`s staying aliveis a great victory for us!
We are so much grateful to The Happy Child Foundation and to all the people who care for helping us with medicines and making us able to receive a hospital treatment, we vitally need those medicines daily,and they are so expensive.
We need your help so much!
The family resides in Dnipro city.
Irina`s phone number: +38 096 135 94 61 (mother)