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.
HEALTH, CENTER (10 of 140)
145 714 381.22 UAH collected in category Health
586 429.07 UAH - in reserve fund of Health
This is a very hard topic, but I decided to tell you, because now our family is in a difficult situation. For six years of treatment of child we have exhausted all our material resources and ask all not indifferent people to help our daughter to learn to walk and to see a real childhood without hospitals and pain. I will say that the birth was extremely difficult, the life of not only child, but also mine was under threat. Margarita was born for a period of 32 weeks with terrible hypoxia. As a resulthydrocephalus,
the defeat of the central nervous system, swelling of the brain, pneumonia, cerebral palsy.
Each mother of a special child is afraid that if something happens, the child will be in a state boarding school for children with developmental peculiarities. The next stage is a home for the elderly and disabled, even if he is only 18 years old. To prevent this from happening, all means, strengths and time are thrown at the treatment, development, and socialization of the child. Often, with such a baby, there remains one mother who is engaged in a child 24 hours a day and has no opportunity to go to work. The benefits of the state are sorely lacking.
"Trampoline for a sick kid? What for? What a whim! Doesn’t a sick kid need anything else?", such questions appear when we announce the fundraising buy trampolines for the children with cystic fibrosis. But what do we know about such kids’ life and their agenda? It is totally unbelievable that mom and kid have very busy schedule. Doing inhalations, taking medicines, monitoring, doing respiration exercises and all the same again and again. It can be minimum 5-6 inhalations per day.
A good specialist and efficient work, without a computer? At this time? Are you serious? For the doctor to work efficiently, he needs to be able to read about new developments in medicine and his colleagues' experiences and to be able to quickly google the necessary information, and to synchronize the modern medical equipment, and to hold a video consultation... But many of the doctors' lounges in the regional children's hospitals in Ukraine not only do not have internet access but do not even have a working computer. Some of the doctors carry their own laptops, some continue working without as if it were the last century. We say enough is enough. Everyone says they want to see "the medical care of the future"? Let us bring the future closer to today--you can help us do that right now!
His story is similar to most stories of children who experience trouble at birth. The healthy boy instantly became sick. At birth, Zhenia received a birth trauma. Diagnosis: total lax parental left hand. The guy had to put up with it. Since then it is a battle for a full life and quick rehabilitation, physical exercises, and special exercises.
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.
Do you remember Denys and Valeria? They are twins, who have cerebral palsy since childhood. Now they are 7 years old, and in September of this year, they went to the first class. It is difficult to say in words how much they want to be the same as their classmates. They want to walk, run, learn and frolic too. But for this, they need to work very hard.
With your help Vika was provided with special food for 2 years. She is stronger and already studying in the second grade (teachers come to her home). But... without food a girl can not lose weight. She has a very dangerous disease – spinal muscular amyotrophy. She cannot walk, cannot sit without support, cannot lift the arms of gravity and generally cannot raise her hands up. All this is due to weak muscles. But her condition can be improved if you take medicine, vitamins and a complex of amino acids. Victoria also needs special food, because she is very ill gaining weight.
The Children's City Clinical Hospital № 1 has Neonatal pathology unit, where every day, unfortunately, preterm babies get to, and 80% of them are diagnosed with icterus. The icterus is the congestion of toxic substances of bilirubin in the blood and its accretion in tissues with staining in yellow color of the skin, mucous membranes or eyes.