"We were prescribed Pulmozyme, but half of the dose remains in the inhalator and not dispensed…", "we use our inhalator for 7 years already and it does not work properly at all…". What to do if a valuable medicine remains on the walls of the tank not coming to the lungs? What to do if the device fails to work under such conditions: from 6 am to 4 pm every day? What to do if one could not inhale and breathe normally?
СF "Open Palms"04655, город Киев, улица Полярная, дом 20, офис 311
Help begins with the verb "to see", "to hear" ... When we were only planning future work, we didn’t draw pictures exactly how we want to help. We just want to do something really right, that thing that is missing.
It is happiness to be healthy and to breathe. When you don’t know what is breathlessness and asphixy. When you don’t need to take lots of medicines, dozens of inhalations, when you breathe easily. I know that the level of oxygen in the blood of the normal person is 95 – 100 %. I know that if the level of oxygen or saturation is less than 94 %, one should take actions. But what to do when this saturation is at the level of 65 %, sometimes even 45 %, I don’t know. Do people live with such saturation or not… or none the less live?
"Mom! Shall we call her Angelina?"б the name to the girl was chosen by her elder sister. The fortune was chosen… Was it God or a chance? The girl first fell sick when she was 3 months; the doctors’ diagnosis was asthma, the same as her father had. But mom Oksana felt that everything was more complicated, bitter. She was trying to find out. Even when the usual analysis showed the norm, she insisted on DNA one. Cystic fibrosis - Angelina is the only one with such diagnosis in her city. And her lungs can’t breathe themselves.
Van’ka hastens to live. Cystic fibrosis doesn’t give a chance to relax, but the boy doesn’t give the illness any extra day. Van’ka rides a horse, shows tricks, plays the baby at the beach, and does yoga… He does chemical experiments, and inhalations, jumps over bonfire, peeps out of the tent… You can look at his photos for hours, and listen to the stories about his life for days… Van’ka hastens to live. His lungs are late. Breathlessness and weakness require staying at home more often. But Van’ka is not going to calm down. He is dreaming about portable oxygen concentrator. Let the apparatus breathe if they lungs can’t. And Van’ka will live!
Dolls for Katia, car, and trucks for Masha; Katia puts on lipstick and tries on mom's high heels, Masha pulls out the tools and plays "house renovation". They look so alike but are so different in personality. Both of them have the same medical diagnosis: cystic fibrosis. That diagnosis means that, during their entire life, they have to fight for every new day. To get tired, to protest, and to overcome. To do the medical procedures while playing, to live while working the procedures, medications, and hospital admissions into one's daily schedule... A child with a serious illness needs so many things to survive, and two children need twice the amount, which means the cost is doubled too. Please help them buy the absolute essentials so that the treatment could work more efficiently!
Renata goes to school; she is an interested and responsible pupil of grade 8. She is nearly crying when she has to stay at home and miss school lessons. Renata is 14 and school is her achievement she is proud of. Preterm birth, ICP diagnosis, first mother’s despair is already in the past. Today the girl walks in the school quickly and confidently resting only on her walking stick. She stands against physical education classes canceling, has a lot of friends among her classmates and Jamala as an iconic singer.
Dima is 13 years old. He lives together with his mom and learns to take the responsibility for himself. He has a serious congenital disease, cystic fibrosis, which does not allow him to attend school. So he studies at home, and the teachers visit him to help with these studies. Between the classes, he does exercises and takes medications. When he feels all right and the weather is also all right, he can go out to play football with other boys. When he is not so lucky, he stays at home, full of protest: why?
Little Yaroslava likes traveling with her grandpa, swimming in the river, listening to music; she also likes visiting friends and giving gifts. When you are just six years old, you want to be friends with everyone in the world and to learn everything you can. But Yaroslava's own body, imprisoned by spasticity, tells her "no". To eat a cookie by herself, to brush her own hair, to crawl up to a favorite toy is a trial and an accomplishment for Yaroslava. The doctors say that she should be able to walk, but for that to happen, she must have surgery according to the Ulzibat technique.
"Why do you need an operation?", I ask. "Arms and legs hardened into stone. We are making both massage and exercises, but her elbows and knees do not unbend completely. Now Marichka is growing fast, her muscles and tendons simply do not keep up with her body, they need help. Every day now is very painful", the mother said. Professor Ul’zibat invented how to help in this situation; his operation methodology really helps thousands of children. It will help Marichka too if only we will be able to pay for this treatment.
When you look at the regular pharmacy receipt for Nastya, you feel “almost desperate”. The girl has a constant infection in her lungs causing high temperature and preventing her from breathing. After the last hospitalization, she was prescribed an antibiotic colistin for 3 months of everyday taking. This is 18 packs or 65 thousand UAH. Where her mom can earn so much money?