Shoes for an inch

State officials often save on children with disabilities until they "do not catch their hand." For example, two pairs of orthopedic shoes per year are written out instead of four

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Horse-car

In the Tushino odnushka, Kosyakins in the very center of the room lives a bright wooden rocking horse. A kind of apartment monument to Victory: for the first time after all the misfortunes and operations, rehabilitologists allowed two -year -old Yana with a congenital defect in the spine of a “sitting” toy. “They wanted to buy on wheels first,” says Tatyana's mother, “but here you won’t accelerate. True, Yana manages even on a gurney without a wheels to drive the whole room, somehow cunningly pushes her forward in a jump. ” And this seems to be family - to be able to move from the place that is not initially moving.

Yana photo: Vasily Kolotilov for TD

The current center of the Kosyakins universe - the cheerful and shabete Yana - without knowing it, regularly ends up at the center of events that have a favorable effect on her own fate, but also on the surrounding reality. Together with Mom Tanya, they begin to solve their pressing problems, and simultaneously help others.

“You know, all our adventures are chains of accidents,” says Tatyana. - We even learned about Janin’s innate defect by accident. I went to a paid clinic to find out the gender of the child. And in this clinic we came across a brilliant diagnostician, which simply humanly advised to make additional tests. I noticed that the child does not spin, does not fidget, as it should already be at this time. ”

It was then that it turned out that Yana had defects of the spine and ribs (the girl was born with scoliosis of the third degree, she turned out to be solved vertebrae, a different number of ribs and several half-charges). Then the doctors repeatedly made an additional diagnosis - the disposition of the legs, and then removed. Usually, children with congenital defects of the spine really have complications in the pelvic area and legs, but in this sense, Yana, one might say, was lucky.

Tatyana and Yana photo: Vasily Kolotilov for TD

“When I called to sign up for an additional consultation at the Filatovsk hospital, the nurse on duty to me on the phone and said: that you, they say, say that the spine and ribs are problematic, but everything is fine with my legs, this cannot be. So she said directly: this cannot be, - Tatyana still remembers the offense. -Against the backdrop of general stress, such a statement knocked out the soil from under my feet. I was nervous, the pressure jumped up in the evening-and now I was being taken to the nearest maternity hospital at the ambulance ... The term was only 32nd week, I was very worried that I did not reach (but at first everything was fine, even did not want to leave, the peak of sales was at work). But what is it here: the doctor said, it is urgent to do a cesarean, otherwise it will be worse for both Jan and me. As a result, on December 3, a daughter was born. I did not breathe herself. They made an injection. She was so tiny! My inch. Even the smallest children's clothes were great on her. I had to sew it ourselves. I still have her first hat somewhere. You just can’t imagine: as if for some kind of gnome toy, sewn. And in the end, the fact that she is such a baby and a little one turned out to be good and useful: it was important that the main fat layer in the operating zone. So it happened. "

In order

It is desirable to operate children with a congenital spinal defect to five years old. Doctors told Tatyana that, although there are no problems with the internal organs and there is no danger of squeezing the spinal cord, it is still not worth it to postpone surgical intervention. After receiving a quota for surgery in April 2016, Tatyana and Yana went in line at the St. Petersburg Children's Orthopedic Institute named after G.I. Torner. They promised to take the operation in December. And the Kosyakins prepared for a long expectation, but then suddenly at one of the forums for parents of children with disabilities it turned out that similar operations on the spine can be done in the center of Ilizarov. And in a month! As a result, they turned the quota and went to the Kurgan. Along the way, the pediatrician was also informed that there is such an option for sick children.

Tatyana and Yana. Yana underwent surgery on the spine and should still go to the corset photo: Vasily Kolotilov for TD

“And now again: everything happens quite by accident,” Tatyana recalls. - Already on the spot it turns out that not all the tests are good, that everything is not as simple as at first it seemed. And the doctor decides to put us not a dynamic implant, as it was originally planned (and which then in age should constantly be pulled - that is, not one operation would be needed), but a constant design that does not require replacement. Of course, Yanka had to walk in a hard corset after the operation for some time, but now we have at least IPRA (an individual rehabilitation and abbreviation program) is not empty. Thanks to the employees of the Ilizarov Center, who went to meet and not only insisted on the inclusion of a new flexible corset in the IPRA, but also recommended orthopedic shoes, about which for some reason all our doctors somehow “forgot”.

With a corset, Yana has complex relationships. She, of course, understands that it is necessary to run and jump in him, but he is so easily unfastened - Velcro! And in the corset it is not at all as fun to run and jump as without him. So Tatyana is fighting with her daughter, who shamelessly cunning, dutifully putting on the corset ... exactly half a minute while her mother looks. However, there were also a difficult relationship with shoes. But Mom Tanya is already.

Steam steam

“I went to ITU on Taganka, probably seven times, if not more. At first, we were generally given pure IPRA, as if a child with congenital disability does not need anything for rehabilitation. Then - after a second examination and confirmation of disability - we included two pairs of orthopedic shoes. And I would honestly admit, I remained in the ignorance that this is a violation of our rights, if not for another chance, ”Tatyana emphasizes.

The fact that there is such an organization as Mardi (the Moscow City Association of parents of children with disabilities), Yana's mother found out not so long ago from the Facebook tape. And it was there that she met the lawyers of the children's human rights project “Patronus”. They themselves went to Tatyana when they accidentally noticed her record about two pairs of shoes in IPRA.

Tatyana and Yana are going for a walk photo: Vasily Kolotilov for TD

“The fact is that the law provides for children under 18 years of age to enter four pairs of shoes a year in IPI,” explains Natalia Kudryavtseva, lawyer of the Patronus project. - If there are two, then there are few options for the development of events - this is either a gross violation of rights, with the corresponding consequences for the head of the bureau, or a technical error. I, as a member of the Council of the Moscow City Association of Parents of Children-Children, contacted the head of the city Bureau of the ITU and asked for what exactly this was. They explained this to me with a technical mistake. During the internal audit, it turned out that Tatyana is not the only victim, and some other IPRA with the same error should be replaced. Tatyana and I went legally and still would get our four pairs of shoes, appealing the decision in the city bureau. But the very fact of the identification of a massive violation is interesting. ”

“The most curious in this story - as the legal four pairs of shoes suddenly turned into two,” Tatyana complements the story. - For example, such words sounded: “So the authorities asks us to do, we are not greedy, here you take off the first two pairs, come for the second two, what is the problem?” And you need to understand what it is to “demolish” a couple of orthopedic shoes for a child with disabilities. This, over there, is worn, spinning, spinning. But there are not walking guys. How can they "demolish" their shoes? At the same time, we are given a couple of summer, a couple of winter, and we, apparently, do not happen in the country ... "

General trouble

Now Tatyana recalls this story with humor, but in the process of walking in ITU it was sad. Yana's mother honestly admits that if not for the “patronus”, she probably would have abandoned this venture and was content with what they gave. (“Thank you for at least gave something, otherwise a difficult orthopedic shoes, you yourself know how much it can cost”). But to pass did not allow the active participation of the project lawyers. They reacted very warmly and with understanding, quietly and calmly doing their work.

“It is very valuable that they track such cases, they themselves make contact, reach the first persons themselves. Well, and, of course, as soon as I heard that I am not the only one - without shoes (also, by the way, by chance, literally on the fly, I caught a phrase nurse that at least six IPRA were with the same mistake), it would have been completely ugly to retreat.

Yana photo: Vasily Kolotilov for TD

And after all, the matter, in general, is not so much in shoes itself, but in our main problem-the lack of information. We talked a lot about this on the forum with other mothers. Everyone has the same trouble. There is no full-fledged information on disabled children: neither legal nor affordable medical. Everything has to be recognized by ourselves, to mess with a bunch of pieces of paper, to go from one institution to another, and then to the third. I was lucky that I was found by lawyers of "Patronus." But not everyone is so lucky, so I would be pleased to know that our story will become a source of valuable information for someone. Let all the mothers carefully look at the IPI children, and if there is also a mistake - they will at least now know where to go. To support the mothers of children with disabilities, there are MAGARI and Patronus. These indifferent people work a lot and hard. And it would be great to support their work. ”

Please arrange a small, but monthly donation in favor of the “patronus”. Its lawyers are engaged in cases of various difficulties-they restore the violated rights of children with disabilities and orphans, help to receive the necessary medicines, treatment and living space. They help the most defenseless. Supporting Patronus, we all become stronger.

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