In Perm charitable Foundation “Dedmoroz” opened the rental of expensive medical equipment. Families with critically ill children is now available for free to the device that the government provides only in hospitals. This, for example, functional bed, extractor (aspirator saliva), the ventilator and other devices. Social organization gives them at the time, while the family will not be able to buy them herself or yet the Fund does not collect it for donation to the desired amount. In addition, certain equipment is required just only for the time – period of deterioration.
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To deliver the device to families of public men began in September 2018. In one of the families, where he had been a surgical aspirator, the father for years used a homemade analog device – the man made it out of the cleaner, three-liter jar, the bottom of which was a means for washing dishes, and medical tubing. But the day before the arrival of the “Dedmoroz” dad his invention threw.
“During the night, forgets how to drink”
44-year-old single father Alexander Batrakov, who used a homemade aspirator, lives in a one bedroom apartment in a remote area Perm along with 13-year-old son Andrew. The boy has hunter syndrome is a genetic disease which almost completely took away his mental and physical capabilities. The child does not speak, only loud breathing or moaning, not moving and not even know his father. Previously, he was laying on the corner sofa, now – functional bed, which was brought together with the aspirator. Each half of the bed can be raised and lowered several times turning the knob under the feet of the reclining.
During the day son usually sleeps. Now, it seems, with interest leads the eyes around – so I woke up, explains Alexander. The man presses the button on a new portable aspirator next to the bed. The device buzzes – and dad brings a transparent tube to the baby’s mouth to collect saliva: the teenager swallows with difficulty. The aspirator should be on hand always, because the saliva can enter the lungs and cause pneumonia. At first the man used a conventional towel. When saliva was very much created his invention on the basis of vacuum – cleaner but when it was time to leave for hospital Affairs on the street, saves baby snot-sucker. The present aspirator costs about 25 thousand rubles: the man money for him there, and in Federal and regional lists of rehabilitation means he is not included.
Father is gaining into the syringe water from a Cup from the bedside table: it’s time to drink, and then feed the baby. Andrew frowns, water pours out of his mouth. “Like the night forgets how to drink,” slowly says the man and puts on chest son’s towel. Touching his hand to his forehead: recently jumped temperature, which is characteristic of this disease. After a few minutes Alexander tries again to drink a teenager. So, slowly, it usually happens: one meal takes about two hours. With a new bed at least you don’t have to lift the boy and put it under the back cushions.
Functional bed costs about 20 thousand rubles. As the aspirator, it is also not entitled to the disabled for free. Then another device for Andrei Batrakov Perm Fund “Dedmoroz” wants soon to declare the donations.
But while the required amount is not collected, the boy will use the equipment. That’s the essence of the project is to help families when it’s needed right now.
The Fund has purchased 111 units to seven million rubles received under the presidential grant. “It is also acceslevel – the new Perm territory equipment of all that we purchased, it is 540 thousand rubles, – says the coordinator of the project “More life” Fund “Dedmoroz” Maria Bazhenova. And oxygen concentrator. He, along with the ventilator and otkalyvalis is what “binds” them to the intensive care unit”. All of these devices the children are free only in hospitals. Despite the fact that the care that they need, can have loved ones at home.
Every Tuesday at the hospital
Mother of Andrew died nine years ago: first, the woman refused the legs, and then started having heart problems. By the time the child’s illness increasingly progressed from the second year of life, he developed characteristic of hunter syndrome the facial expression, thicken hair and less moving arms, legs and fingers. To five years the kid stopped talking. Alexander now understands his “language” as: moaning – you have to turn on his side or with her back to the side, smacking – so hungry.
After the death of his wife the man some time he worked as a driver on city bus routes. But then I quit: figured that the entire salary simply would have gone to the nurses for my son. The family now lives on a disability pension and a care benefit child together is 22 thousand rubles. Batrakov, a senior, has almost ceased to leave the house – if only for a short while in a grocery store. Or son together in the regional children’s clinical hospital, there have to go on the bus – every Tuesday Andrew to do the injection of a drug that compensates for the missing in the body of the substance.
For some time the boy could walk, the father sometimes took him in his arms. Three years ago, next Tuesday, they went to the hospital. Then suddenly he began to fall as soon as the father put him on his feet. Since then Andrew moves only in a wheelchair.
A couple of times Alexander was called to the office of the Ministry of health. Complained destroyed the ramp at the hospital where they went. After that, the ramp was repaired. Another time asked me to injections son did in the 21-th clinical hospital close to home. “Said, “I will Consider your offer”,” – says the man. But within a year after the call, nothing has changed.
“Cut off from the outside world”
The issue with the hospital was resolved only when the family began to come service workers support families with critically ill children. She appeared at the end of 2017 with the participation of the Fund “will Dedmoroz” and works on the funds of the regional budget. It includes doctors, psychologists, social workers and others. They supervise 57 Perm families. The city has about 200 families with critically ill children, but in these most difficult situation. Specialist acrobate Catherine says that they “for several months, conducted negotiations” with the Ministry of health. In the end, one of 21 nurses in the hospital trained to operate the equipment, and Batrakova began to walk there.
Catherine recalls that a year ago when she started working with Alexander, he looked too alert. “His eyes were saying “Who are you, why are you here?” – says the interviewee. – Although it is, of course, this would never have said because I was grateful for any help.” Catherine explains such a reaction to the fact that men have long been “cut off from the outside world.” “Despite the severity of the disease, he gave his son to boarding school, though no one would have condemned, she said. He’s a healthy male, wants to work and maybe to create a new family. Nevertheless, he dedicated his life to the son.”
I have some free time
Over time, adds Catherine, Alexander became more open: now even immediately takes the phone, although I could not do. Palliative care service also provides parents free caregivers, albeit for a limited period. This gives men some free time. He said that he became calmer when you need to leave home.
Recently Alexander asked Catherine if he could get a job and keep the pension and child benefit. It turned out there. Now, according to the man, he became interested in design sites and on the Internet looking for video tutorials on this topic.
With the advent of rental of medical equipment, “Dedmoroz” the opportunity to offer his charges another and the equipment, which few people can buy myself. If necessary together with him give and consumables: in the case of a surgical aspirator – tube, and filters.
Build the bed the man started as soon as the movers brought it into the apartment. “A box?” – Alexander asks the employee public organization on a cardboard box under a functional bed that lies on the floor. “I think, for now,” answers Eugene Chernyshov. She explains that in the future the device may be needed by other families.
Mikhail Danilovich
Photo: Yaroslav Chernov