Vania is 18 and sometimes he doesn’t want to live anymore. It is a very difficult time. Sometimes he doesn’t want to live at all, and the next day he desperately wishes to live. In fact, Vania doesn’t want to die, he just can’t handle it himself – severe congenital disease undermines the body and now it has eaten the lungs. The boy is hard to breathe himself, Ivan is suffocating. The oxygen concentrator helped him to breathe for 5 years and now the first apparatus has broken…
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).
One can say lucky - Yegor was diagnosed heavily in half a year, therefore, he did not manage to destroy the organism, the correct treatment stabilized the condition of the baby who had spent the first months of life in hospitals. In a year and two kids lost their mother - since then the grandmother worried about him. The rest - like everybody: in his 8 Egor likes to construct cars and planes from lego, loves animals, is interested in the history of dinosaurs, dreams of becoming a paleontologist when he grows up. He still does not understand: in order to grow up, grandmother must find money for supporting treatment again and again.
"I am a cheerful, active person who loves life very much. But my illness is progressing... I am happy that I have a family – my little girl and my husband – and a job I love. Often, people don't give a second thought to how wonderful it is to be able to work, travel, or go about their daily tasks without having to think about medications, medical equipment, nebulizer treatments, and hospital admissions," this is how Masha's letter begins, and she truly knows the value of every day. Ever since she was born, Masha has lived with a severe genetic disorder – cystic fibrosis. There are very few adults with cystic fibrosis in our country; every day of her life is a miracle.
People with incurable diseases need help, support, and care, no less than those who can be cured. They need basic things, such as being clean, smelling good, or clean hair, no less than anyone else. Any of us or any of the people close to us can find ourselves in the position of a seriously ill person. To contribute today to that person being able to live their last days with dignity – without pain, clean, and at peace with themselves – is the least we can do for that person... and for our own future selves.
"I am ashamed to ask. But it is already hard to move, I am simply exhausted. I suffocate. And I'm 21 years old," Yura writes. He also writes that he graduated from the technical college and he wants to look for work. And that he is not ready to be prisoned in four walls chained to a power outlet. But now there is no other way out for him: his lungs do not work and the oxygen caddy breathes instead of them. It helps very well, but there is no battery and you couldn’t go out: the oxygen caddy is powered only by the mains. Yura kindly asks us to buy a portable oxygen caddy for him, which he can take and go out without restraint.
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.
"We kindly ask your support to pay for the after treatment for my son to become stronger and fulfill his life-long dream – to learn to walk without help and travel”, mum says. 19 years ago Alexandra's life was divided into "before" and "after" and all her dreams became the dreams for two people. Misha has a nasty form of cerebral palsy. If only one can imagine what a huge amount of work for him is literally every movement, every household skill, you would definitely call him a hero. But it is not enough to practice at home with his mother to move forward, to prevent backsliding. Intensive rehabilitation course in the special center is required twice a year. The nearest one is in April, but the mother is not able to pay for it.
Looking at Renata now, probably no one would guess that this beautiful girl can need any help. Though, it’s true. The child was unlucky at birth and since that time her whole life is a struggle. The girl she is now, she has made herself with hard work and patience, with the help of her mum and numerous rehabilitants. Now Renata is studying at school, can walk all by herself and likes to be vibrant. Every day she is working at her body at home, and two times per year she needs intensive classes in the Rehabilitation Center. The nearest course is very soon, but her mum doesn’t have money to pay for it.
"Is it possible to ask for help urgently? It's very hard again. The temperature is high, we can’t do anything at home - we need a hospital and an antibiotic intravenously. Urgently need", mom's voice in the phone is interrupted by emotion and it sounds very quiet, Mom knows that neither she nor the foundation has "extra" thirty thousand, that it is necessary to collect and wait ... and that every day of waiting for her lovely daughter is deadly dangerous.
"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.