Right next to us, there is another world. A world in which there is a large risk that one's life will end before one grows up. A world in which feeling all right is not a normal thing but a luxury, for which one must pay a large sum of money every month. It is a world of daily constant work, and whether you will wake up in the morning or stop breathing overnight depends on doing this work. It is a world of a rigid daily schedule, any deviation from which can result in a premature death. It is a world of people who have cystic fibrosis. And they cannot survive without our help.
СF "Open Palms"Київ, вул. Полярна, 20, офіс 311
The Foundation works in the field of palliative care and provides:
- equipment and other type of support for children and adults who, due to temporary or chronic respiratory failure/oxygen deprivation are not able to breathe properly on their own. The Foundation’s operations include: a separate integrated program aimed at supporting children and adults with cystic fibrosis;
- equipment for pulmonology, intensive care, and other hospital units treating children and adults with respiratory and/or oxygen insufficiency, for hospices and palliative care units;
- advisory support for palliative patients (recognized as such that cannot be adequately treated) and their families on the issues related to pain killer prescriptions, home care, etc.
the program "Man needs a man", a special project: "letters of the angel" (friendly support for children who are being treated for cancer in the city of Kiev).
Anastasia, 12 years of age, is a smiling, pretty girl. She loves to draw, to read, and to travel. She is taking dance lessons. Her dream job, when she grows up, is to be a journalist. Anastasia, 12 years of age, is pale – she has chronic hypoxia, the bronchiectases are getting larger, and the pulmonary hypertension is getting worse. She is dreaming about growing up. About being able to breathe easily. And all this is about the same girl. So far, it is not yet noticeable on the outside, but her lungs are damaged by a serious illness and cannot breathe normally; sometimes, Nastia can hardly breathe. She needs some help from an oxygen concentrator.
And again as a report. Chernigov asks for help. Asks us with you, for there is no time to wait. Today there are more than 700 children with asthma and 12 children with cystic fibrosis in the district, and severe pneumonia can happen to any healthy child one day. Anyone of them may at any moment need additional oxygen. Suffocation is bad, terrifying, especially when it happens in the hospital. Indeed, in the pulmonary department, there is not a single oxygen apparatus, and children are sent to the intensive care unit to "breathe".
Nastia, a second-grader, has had to grow up faster than her peers. She likes school, but she often has to spend time in the hospital instead, because she has a severe congenital disorder. At her young age of seven, she knows what it's like to fight for every single day of her life. Her diagnosis – cystic fibrosis – is an illness with which one can live for many years, but only if one has personal medical equipment at home, takes multiple medications every day, and does several sets of exercises every day as well. Her parents, unfortunately, cannot afford all the necessary medications and equipment.
"It all started with a sudden high temperature. It's not terrible - with my diagnosis this is common”, I was thinking. But not this time. The disease recurrence led to a hospital - for the fourth time this year – I had to take expensive antibiotics intravenously and had an additional supply of oxygen. The acute condition finished, but I was still chained to the oxygen machine - I cannot go outside without it, I suffocate,” Dmitriy writes. But it is not the end, not a final verdict. The boy will be able to continue to have active life, if one can purchase a portable device.
His every day is a day of struggle with a rare and horrible disease. In order to win life, a little Vasyl’ko needs not only daily massage, exercise therapy, and breathing training – even in order to eat, the baby needs help. "Due to the progression of the disease, our boy lost his ability to swallow and is fed only through a probe. Very expensive special nutrition is required for this. We kindly ask all good people to help our son", Vasyl's mother says. And it is necessary to respond immediately, because without probe nutrition the child may die from exhaustion.
If one looks at his regular photos, Yurii is a cute, funny...regular boy. But then, in her letter to us, his mother mentions that "he is seven years old and weighs less than 40 pounds" and attaches a full-height, unedited photo. Looking at that photo, one can count his ribs and make a drawing of a human skeleton. The child is only seven years old, and his body is already misshapen because of a severe congenital disorder and...because of the lack of nutrition and medication and equipment, all of which are necessary for daily treatment. All these are very expensive. Very expensive; impossible to afford for a family living in a small village in Ukraine's Karpaty Region.
"Ever since he was born, we'd been fighting to stay alive; we've survived three surgeries and have to treat several chronic illnesses daily; we can't do all that without your help. Nazar is 8 years old now, he's finished 2nd grade, but because of frequent pain and coughing, he is losing interest... He very much wants to sign up for one of the school sports, but so far, he's denied, because of his health. Nazar understands the necessity for daily treatments and has almost gotten used to them. But now and then, he does ask, 'Why me?"... We don't know the answer. However, we can help him.
My birthday is on the August, 3. I have everything. Friends, family, my beloved work, in which I am good, and those with whom I work are good too. I have my Calendate project, and my super team. I want to give my 31st birthday to the girl Nastia. She has cystic fibrosis, a genetic disease, a breakdown in DNA, from which no one is secured. Because of this disease, the fluids in the body become viscous, it becomes almost impossible to breathe. Together with cystic fibrosis, there are accompanying problems – with the pancreas, lungs, liver and so on. Nastia has all of them. The combination of diagnoses so harsh that we really do not know how much time Nastya has left. And we really want her to spend this time interesting and joyful. It's possible.
Two daughters, two mother’s suns, a double happiness for the parents! Double afterclap is to know that recurrent colds are only the top of the iceberg, only presentation of the dangerous genetic disease of cystic fibrosis. Both sisters have it at once.
Establishing a true diagnosis and correct daily therapy helped to stabilize the girls’ health, but at the same time posed an excessive task to parents: to provide not only a double supply of medicines for each day as soon as possible, but also to purchase immediately a lot of medical equipment. It depends on it for how long the girls can resist the illness, how often they will get to the hospital, will they become adults?