The house is on the slope

It rumbles overhead, and Irina raises her voice a little. Her two daughters, Sofiki and Alena, are dancing. Sophia seems to fall from the stroller and laughs so that it dries the teacher’s exhortation. Once these girls live differently-and now it’s scary to think about it

We help medical assistance to children with Spina Bifida collected 1,645 099 r need 1 830 100 r help

The room has thirty children - and quietly. Children look with curiosity from the lattice cribs, for some reason there is not a single toy, not a single bright spot in the room. Carpets on the wall, in a checkerboard pattern crib, children in the same official clothes. “These are children with deep mental retardation, idiocy,” explains the director of the orphanage for children with disabilities in one of the depressed Russian regions. This does not explain why they do not have toys, but you can’t ask questions: in principle, they don’t very willingly let the volunteers into the “mercy” department, you need to gain a foothold, try to pull the classes here, and at least something bright, my colleague is just a mobile, arc with toys over the bed. The child in it instantly pulls his hands to the bright.

My gaze stumbles upon an absolutely conscious response, I go to a little thin guy, I take him in my arms. A characteristic thickening at the bottom of the spine, twisted small legs.

“Excuse me, but he has Spina Bifida, right? Why is he lying in the mental compartment then? With “bifid” intelligence is preserved. ”

The director is not very pleased, something grins back. I write out the fund’s phone and please call: they will send doctors, it is very important not to miss the time, to conduct research. She hides a piece of paper in her pocket without interest.

It was four years ago. Of course, no one called the fund.

Irina is rebuilding the house

The car gets into one pit, into another, scratches the ground with a bottom-according to legend, Batu once called Kozelsk a “evil city”, and for a car industry this is one hundred percent. Irina, who meets me, says: “Imagine, I’ve been back and forth for four years with a stroller, to school-from school, to classes, for buses. Hands pumped up-wow. ”

Kozelsk. Irina’s house view of the house and her family photo: Anastasia Lotareva

Before adopting her sixth child, Irina broke her hand on this hill. This was her “first time”, she was about to take a child with disabilities. Colleagues at work (and she worked as part by the scum, nearby the famous monastery of Optina deserts) said: “This is God allows you, Ira! So you don’t have to take this baby. ”

Irina was not that she listened, but went to the priest. The priest cursed terribly, but not on her, but on gloating colleagues: “What, in your opinion, God is a bully and will substitute the steps for you?! Take and don't even listen to anyone. ”

Irina, a mother of six children, wanted to take a child for a long time. They lived in their house on the slope together and joyfully, she kicked out her husband with alcoholism together, leaving herself a stepson ("although what kind of stepson is he? The word is one, and so - a son, and that's it"). The eldest sons and daughters grew up good and sensible: one engineer, another oncologist, future journalist, publishing. All children always gathered around Irina's mother.

“For some reason, we loved to watch programs, on the fifth channel it was like this: either to help sick children, then to adopt someone. And they stumbled upon an interview with a boy, a stroller. I am now absolutely sure that he has Spina Bifida, I know everything about this diagnosis now, and then I did not know. We just were all amazed how glorious he was! And at the end, the correspondent asks: “And if your parents are found after this transfer?” And he completely calmly says: “No, that you, they take other children to families, good. They will never take me!” ”

Irina shows a ramp, who made her eldest son. Now both Sofiya and Alena can independently get to bushes with berries photo: Anastasia Lotareva

By clicking the button on the remote control, the family began to confer of adoption as a completely solved case: we need to redo the first floor, think something with the second, make ramps. Collect documents. In the documents of Irina they will refuse a little later: "I seemed too old to them." Irina is now 61, she moves in the kitchen easily and confidently, with an athlete's plastic: runs marathons, looks at the famous Ironman triathlon.

While collecting the second time, while persuading guardianship, the boy was adopted. Irina was not upset - how can I be upset if the child has found a family? But they all decided to take a child together with Spina Bifida. And the house was rebuilt - and even to the berry bushes the eldest son led the ramp. Because can something be better for children than the berry right from the bush?

Sophia is dancing swing

Spina Bifida is a defect in the formation of the fetal nervous tube. That is, the child who has not yet been born - splitting the spine and hernia of the spinal cord. In Russia, one child out of a thousand is born with Bifida. Depending on how high the hernia is located on the spine, its consequences can be of varying severity. Some of the children with Spina Bifida are finished with lameness and lifelong problems with the bladder, they need medical rehabilitation and social adaptation, but their life is more or less like the life of a healthy child. But often the consequences of Spina Bifida are much stronger. Even despite the spinal cord operation, which is done immediately after the birth of the baby, the children remain paralyzed. They do not feel the legs - and they are deformed in the process of growth so that they can’t stand on them, but even their pants are not worn. The pelvic organs do not work: children are incapable of independent urination and defecation, die of renal failure.

It rumbles overhead, and Irina raises her voice a little. Her two daughters, Sofiki and Alena, are dancing. Sophia seems to fall from the stroller and laughs so that it dries the teacher’s exhortation.

Sophica appeared in Irina four years ago. When she got from the orphanage to her mother, after a while the girl managed to get out of the stroller, and part of the time she now moves with the help of special devices on her legs. She overcame several serious marathons - the whole room is hung with medals and diplomas. Sophica - fire, sun, "positive", as Irina says.

Irina's grandson Dima circles Sofia in her arms photo: Anastasia Lotareva

The first days of Sofia at home, a little that was compressed and covered the navel. They realized why she did this, much later, when the girl said that if she did not obey, the educators painfully pinched her stomach. Conveniently, there are no bruises. For example, for a long time, for a long time, it didn’t work out with diapers for a long time: the girl stubbornly did not say when she went to the toilet. Then it turned out that those who could not cope with the pot, and the child with Spina Bifida is not able to do this on its own by definition, could force their own feces. "Well, this is so that we do not indulge, mothers!" - Sofiyka spoke hastily, and Irina only cried. She cries now, when it retells it to me. Even a good orphanage cannot insure from a meeting with people capable of abuse.

Sophia gets up from the stroller and jumps on Dima, Irina's grandson, they hug and laugh loudly. Prior to this, “rises from the stroller” there were days, months and years of therapy. In Kozelsk, of course, there is nothing, so it was necessary to drag a stroller with a girl in Kaluga, first along the slide to the bus, then transplanted to another. Coach, dancing, marathon, training at home. Now Sofiyka dancing swing under the melody from an old computer, bends his hands, moves smoothly and beautifully. Irina cannot see enough, he says: "Nastya, well, look, look what girls I have."

Alenka learns to read

The second girl, Alenka, is sixteen years old. It is incredible, old -fashioned beauty: a thick long braid, a royal planting of a head. Irina specifically warns me that I do not say the “queen” or something like that: in the orphanage, Alena suffered both for her femininity and for this proud posture. A little that the girl was besieged, they say, look, there was what kind of king was, what, a princess, or something.

I tell you how I saw a boy with Spina Bifida in a crib, for years sitting behind a wooden grill. Ira nods and says that it was the same with Alena. She is 16, but she does not know how to read and write. For many years, the blood mother did not agree to abandon her rights, but never even came to the orphanage to her daughter, Alenka sends the smiles. The blood mother does not answer - “read”, and that's it.

Sofiki and Alena are preparing for a remote dance lesson photo: Anastasia Lotareva

Alenka has one kidney, and she works twenty percent. Actually, she could be like a sophia-to move not only in a stroller, to be much more active. To do this, you need to deal with the child. Irina sighs: late she found her daughter. Again, they did not want to give documents for adoption, in the Kozelian custody they even said: “No more than two disabled people in one hands!” Irina overcame all this, but by that time Alenka's kidney almost did not work.

Children with Spina Bifida definitely need to do kudi - a comprehensive urodynamic study. It shows what manipulations should be done so that the person does not lose the kidneys. Irina nevertheless managed to pick up Alenka before her buds stopped working completely and she would be tied to a dialysis apparatus. Now they are waiting for surgical interventions after quarantine, Alenka will do one operation, then another, and stretch out.

Alenka has a dog and a book in his hands. The gaze glides along the lines, is fixed in the pictures. There is still a long road ahead: endless classes, tutors, so that the child’s absolutely intellectually intellectually confined intellectually is taken to school. Now Alena has a diagnosis of “mental retardation with a pronounced moron”, and I, looking at how she talks with sophia, squeezes the dog, answers me questions, I think: “Who, how could this girl have such a diagnosis, breaking her any opportunity for study and development?”

Alenka and dog photo: Anastasia Lotareva

Irina does not scare the diagnoses, does not scare the need to teach her daughter to write and read. The main thing, Irina says that Alenka is at home. We will pull out, do all the operations, we will do everything. Irina looks at Alena so that an impregnable and distant girl suddenly smiles widely and cheaply. Almost laughs.

The Bifida Foundation helps the family from the house on the slope. At the expense of the Fund, a neurourologist advised the family. It is thanks to their efforts and on time made by Kudi Alenka that they will perform an operation, and if everything goes well, she will not need to be for a lifelong dialysis. Help is needed not only by them - if we all collect the right amount, Kudi will be able to make twenty children, but will also teach specialists - urologists and neurologists - at the course “Fundamentals of Neurourology” so that they can work with children with Spina Bifida.

Please help the children not be attached to dialysis - and their parents, who will be a hundred times heavier without help. Your 50, 100 rubles per month is real and real help. Thank you.