"The equipment either works or… doesn’t work and is in a state of repair", and this is at pulmonology ward that treats children with breathing problems! What can doctors do on such occasions? How can they help and save children under such circumstances? And we’re not talking about a couple of children – Pulmonology Ward of Sumy Regional Children’s Hospital is designed to treat 30 children, 10 of them – children with allergic disorders and 20 – children with disorders of respiratory system, including cystic fibrosis, congenital diseases, chronic conditions, severe cases of pneumonia and recurring bronchitis. Any child could find himself/herself in this ward.
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.
When we first met, Misha was 7 years old, and now he’s 12, but he looks younger than his age. He always smiles. When you look at his photos – in a suit and ironed shirt, with a neighbor’s cat, out on a walk, all you can see is just a regular kid, except.. he’s quite thin and short in height. Congenital cystic fibrosis, surgery right after birth, severe enzyme deficiency… Misha should always receive special high-calorie foods along with his diet; otherwise, he doesn’t grow, and the less his weight is, the harder it gets to treat any infections as they come.
What is the deadliest enemy for the kids born with the cystic fibrosis? Serious infections’ bacteria settling in the lungs cause chronic lung disease, keeping children away from breathing. It means strict requirements not only for the cleanliness but also to the sterility. It implies that small cups of the inhalation devices, inhalation trainers and sometimes even utensils shall be sterilized after every use. Every day for life. The life itself depends upon it.
"I have two children, and nobody but myself cares about them. I am not planning to die. I mustn't get worse", that's how we first met Sasha. She is 28 years old and she is the mother of two adorable children – Stepaт and Kseniia-Kvitka. They are just 8 and 6 years of age, but they are already responsible and help their mom as well as take care of her. Sasha has a serious illness – lung hypoplasia and emphysema. That means her lungs are not working well any longer, and slowly but inexorably, they are dying.
Ania is 26 years old and her life costs almost 29,000 UAH per month. Her parents work and Ania is trying to do her best also – still, the numbers don’t add up. Ania has cystic fibrosis – a congenital genetic disorder which is like a lottery that cannot be forestalled or predicted… The moment a baby is born with CF, you start fighting for his/her life, daily. Back in 1991 cystic fibrosis was a little-known disease in Ukraine, there were no doctors to treat it, let alone government funding of the related drugs. The fact that Ania had survived through her childhood can be credited to the titanic constant effort of the whole family. However, today she is the most severely affected patient in the whole country while remaining, at the same time, just a 26-year old girl who simply wants to live.
"Asia even went to school together with everybody". "Does she have time to do the procedures?". "She even managed to make up!", we speak with her mom. She likes to bead, to do coloring books and is keen on code writing: all these things are about Asia. Girls at 15 are like that. They do not care about diagnoses, even severe ones. But one – and the breathing is seized... two – the heart hurts... Asia has cystic fibrosis, Asia gets tired quickly, and she has problems with breathing. An ambulatory oxygen is a thing that will help the girl to live big.
"Now I live in the resuscitation department. I feed my baby using the pathfinder, sanitize. I go home only to sleep. We will be dismissed from the hospital only when we have all the equipment and learn how to care about our baby without medical help", in this way we came to know about Vasyl Vorobiov from Kamenets-Podilskyi. His mother Vita asked us to help them to come home as soon as possible.
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!
"Help me breathe! I can't breathe, please help me," the patients who are admitted to the pulmonology unit are always asking, with their words, their eyes, their gasping breaths. Some of them have an asthma exacerbation, others have a severe form of pneumonia, yet others are living with severe chronic respiratory illnesses, when the lung tissue gradually dies and when, without specialized medical help, life becomes a living hell. 1,426--that's how many people were treated in the pulmonology unit of the Ivano-Frankovsk Regional Tuberculosis and Pulmonary Center in 2016. Thanks to the doctors, and sometimes in spite of reality. Because the equipment the pulmonology unit currently has makes it very difficult to treat patients.
"The place for a spirograph", says the caption under a photo in a letter I'm reading. "We don't have our own spirograph device in our department. The hospital does have a spirograph, but it is so old that it no longer measures anything correctly." The children who have severe pneumonia, asthma, acute allergic conditions, autoimmune disorders, cystic fibrosis, severe congenital lung disorders... Children who can't breathe normally, come to the pulmonology department for help.