To live to see the grandchildren. Lera Chupovoy needs a vibration vest for 1 million

Weekly “Arguments and Facts” № 45. Apples in the snow and vegetables also 10/11/2021

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The week of cystic fibrosis, which began in many countries, & ndash; this is an occasion to learn more about the most common hereditary genetic disease and to help those who struggle alone. each donated & shy; ndash; this is a new day of life given to someone. Lera Chupova now needs a lot of days.

Help is needed Lera Chupova (7 years old, Kemerovo region) will be able to resist her illness with equipment worth 1 million. “ Every night I listen to Lerin's breathing, trying to distinguish wheezing. If the room is quiet, I get scared: what if she suffocated? I jump up and shake my daughter by the shoulders until I understand & ndash; alive. '' Facing fear and insomnia of Zhenya Chupova from the town of Belovo, a psychologist turned out to be powerless, to whom she recently turned for help. Before the illness of her daughter Lera the whole world medicine is powerless. Cystic fibrosis is not yet cured, but you can sleep well with it and live a long life.

Before Lera, Zhenya did not know that she turned out to be very strong. He remembers the discharge from the maternity hospital and how her husband and I were waiting for a call from the polyclinic after the analysis from the heel taken at the maternity hospital: “ The first long-awaited child ''; you understand. '' A month has passed, but there is no call. This means that everything is fine, no deviations were found. And Lera, pink-cheeked and plump & ndash; she is six months old, she grows, smiles with a toothless mouth, focuses her gaze.

The Chupovs got a call two months later. They said that the analysis was lost, but now it was found and they urgently need to go to the doctor & ndash; the child has a suspicion of cystic fibrosis. Zhenya knew nothing about such a disease. Googled & ndash; and didn't want to live.

In Lerin's lungs & ndash; viscous dense jelly, in the stomach, liver, pancreas & ndash; too. These lumps of mucus cannot be coughed up or removed from the body without drugs and equipment. Parents of children with cystic fibrosis measure sputum in half-liter jars, determine by color whether it is time to connect an antibiotic, and dream of one thing – to see a son or daughter as adults and without an oxygen concentrator. & nbsp;

“ For the first two weeks I was hysterical and was afraid to feed Leroux: it seemed that she would now choke. I will lay her down, and I will hide in the toilet myself, I will kneel down and pray. ” Zhenya was so swiftly and casually left alone with the trouble. The husband said that there were no disabled people in their family, packed a suitcase and went to another family.

And then Zhenya met the same parents as herself. She was added to the chat, where everyone has one problem, included in the drug procurement groups, and told that there are charitable foundations. It became clear: with the right therapy, she would grow up her daughter, and even have time to nurse her grandchildren.

When a dangerous flora was found in Lera's lungs, the mother of a child with cystic fibrosis from neighboring Novokuznetsk immediately responded: “ Don't cry, quickly fly to me for an antibiotic. '' When bronchitis prevailed, our foundation bought Gianeb. & ndash; and Lera has not been choking from coughing for almost 3 years. The dad of two sick children from St. Petersburg helped with applications to Ming & shy; sane, and Zhenya made sure that they were diagnosed with a disability before the age of 18 (the first 4 years had to be renewed annually). It became clear & ndash; Chupovs are not the only ones drowning in a quagmire. And it's not a quagmire at all – ordinary life, where everyone is for everyone. This is the only way to stay afloat and wait for the latest gene therapy drugs to “ recode '' broken genes will be available to their children.

The function of Lerin's lungs by the age of 7 is 100% preserved! The girl does not sit within four walls at home schooled, but attends a regular school, three times a week & ndash; vocals. But for this she has to spend 6 hours a day on inhalations, massage, kinesitherapy. With a vibrating vest, which instead of mother's hands knocks phlegm out of the girl's lungs, it would be easier, faster, more effective. But the vest is gone. And money for him too. The most surprising thing is that Zhenya was the only one in the region who managed to enter this equipment into the IPR (individual rehabilitation program), which means that the state should issue it. But the conversation with the Ministry of Health is short: “ Are you special with us? '' Another victory remained on paper.

Instead of a vibration vest, Zhenya bought a massage belt for 1600 rubles, which he wraps around Leroux three times a day. Little sense, but still better than nothing. & Nbsp;

They will not be given a vibro vest, no matter where you write it, & ndash; they are not special. We can buy it with you. So that Lera grows up and does not get sick, she went to circles and does not miss lessons due to illness. And her mother slept peacefully at night and firmly knew: they are not alone, they will not suffocate.

Opinion & nbsp; expert

Pediatrician, expert of the Albina Dobrotok Foundation:

& ndash; For effective daily kinesitherapy, Valeria is shown a vibrating vest of the “ The Vest '' system. As a result of a rhythmic, squeezing effect on the chest, liquefaction, separation and excretion of thick mucous secretions occur with the help of an ordinary cough. The system occupies an important place in the complex of kinesitherapeutic measures for cystic fibrosis and improves the functional parameters of the lungs. For Valeria, a vibration vest is vital.

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