You can’t wish the enemy

Seven -year -old Violetta has a very rare disease - short intestine syndrome (SCC). There are only 250 children with such a diagnosis in multimillion -dollar Russia. And in the Ulyanovsk region, Violetta is one. For three years, the mother has been seeking special food for her daughter from the regional Ministry of Health. Without him, Violette cannot survive, and his parents have nothing to buy for him

When the summer is crying

“In appearance - a child like a child. And the fact that she has three stomas and a catheter sewn is not visible from under the clothes, ”Elena's mother shrugs her hands.

On the Violetta T -shirt is a carefree large butterfly. Somewhere under it, a gastrostoma, colostoma, cystostom, subclavian "Brovyak" are crowded on a children's tummy. Half an hour ago, Elena turned off her daughter from a dropper, to which she is attached 12-14 hours a day. And now, on the move, really, you will not understand that the child is not healthy. A cute blonde girl with curls enthusiastically draws with paints, sticking out his tongue with zeal. On the white sheets of the album, multi-colored men, houses, flowers live their lives, spaceships fly somewhere in the light of bright yellow stars. In each figure, the artist carefully displays four letters - “Summer”. So her name is at home.

A week ago, Violett was recorded to school, and in the fall she will go to first grade. “We hope to go,” Elena stipulates. Whether the daughter will manage to go to school with all the children or will have to be transferred to home schooling, it is not yet clear. True, the attitude to the school of the Leta itself was changed by the coronavirus. During the restrictions, she had seen enough of the torment of the “remote” with the older sister, the ninth graders of Julia, and changed her mind to school.

Violetta photo: from personal archive

A sociable, open Violette with other children will be more interesting, mother is sure. But will health allow? Elena is ready to go to school with her daughter, to insure in case the stoma starts to leak, the patch will peel off or something else will happen. Deterioration of the state sometimes arise suddenly. Even just from stress. And then you have to urgently rush to a paid laboratory - take tests, find out which indicators fell or go through, call up the doctor and adjust the drugs for the dropper. Dehydration, violation of the water-electrolyte balance can cause a violation of the heart and deadly.

Before the birth of Violetta, Elena worked as a seller in a store and was never interested in medicine. Now he copes with stomas and dropper herself. You won’t run into Moscow for help, and local doctors have less experience in such procedures than Elena. Just did not encounter. I had to master all the wisdom of myself.

“I was lucky, Violetta we have a wise girl. Sometimes it reminds itself that it is time to connect a dropper. Stoically endures it all. Only sometimes he cries quietly when it hurts. ”

Things are bad

In the spring of 2013, the family was waiting for the second long -awaited daughter. Doctors warned that the child’s bladder was increased, but they reassured: everything would be eliminated when the baby is born. The fact that this hides big problems of the digestive system, no one foresaw. The girl was born with a huge stomach, bloated due to excess fluid. For several days, the excretory system did not work. From the hospital, Violetta and his mother were transferred to intensive care. A month and a half in the hospital. Somehow the condition was stabilized and discharged.

Violetta with mom and dad photo: From personal archive

Elena describes what happened to them in two words: "somehow existed." Behind them is fear and a sense of helplessness that you cannot help your child. And the confusion of doctors who change one diagnosis to another.

Violetta gained weight very poorly and barely moved from weakness. Constant vomiting and diarrhea selected the last forces. Consultations of a nutritionist and a gastroenterologist, different food schemes - nothing helped. For two weeks, my mother and daughter spent at home - a month in the hospital. Fulf was treated for pyelonephritis, discinesias, tonsillitis and other ailments. They put antibiotics, from which she only got worse. We did several operations due to intestinal obstruction.

The girl almost did not get up, there was no strength to move with a huge belly, like in pregnant women. I played only in bed. Weakness. Intoxication from stagnation of fluid. Things were completely bad. Four years later, local doctors signed in their own impotence and gave a referral to Moscow, to the Filatov hospital.

Medical affairs

In Moscow, the diagnosis - Hirschprung's disease - refuted, put Verden's syndrome and, as a result, a short intestine syndrome. Children with such a pathology often do not live up to a year, said to Elena the Moscow doctor. Violetta's intestines are not able to absorb nutrients from ordinary food and drinks. Therefore, everything that she eats or drinks flies to the exit, just like a pipe, or, conversely, gets stuck and stagnates, causing intoxication. For example, a day she can drink no more than 300 milliliters of water. An extra sip can become a poison.

Violetta photo: from personal archive

In Moscow, Violetta picked up parenteral (intravenous) nutrition, launched stoma. And the girl’s condition immediately began to improve. At first, she spent 22 hours a day on a dropper. But gradually this time decreased. And now Violetta spends 10-12 hours a day as a “normal person”-this is the name of Elena. He plays, draws, sways on a swing and walks.

Elena learned from the doctor in Filatov’s hospital about the “Wind of Hopes” organization, which is engaged in the help of people with a short intestine syndrome. I met the mothers of other children with SKK and realized that they were not alone. “When you find out that the child is incurable and a dropper - this is for life, it becomes very scary. And to know that you are not the only one in your misfortune is very important. When I see that there are already adult children with SCC, who live almost a normal life on parenteral diet, study at universities, work, this gives hope that everything will be fine with us. ”

Judicial cases

Now Elena's main alarm is how to feed her daughter. Complex intravenous nutrition of Violetta is vital. However, providing parenteral nutrition for home therapy and rehabilitation in Russian legislation is not clearly settled, so each region interprets the law in its own way. The Ulyanovsk region is no exception. Elena appealed to the Ministry of Health of the region three times and received a refusal.

In the year, food for Violetta costs about two million rubles. For the family, this is an incredible amount. The monthly budget of their economy for four people is approximately 40 thousand rubles. Dad driver receives about 20 thousand, the second half of the budget-Violetta’s pension and mother’s allowance for caring for a disabled child. Elena says that her husband is ready to go to work in another region, but they simply cannot cope without him. Dad with a car nearby is an opportunity at any time in the event of an attack or a sharp deterioration in the situation to get to the hospital or laboratory. Sometimes there is simply no time to wait for a taxi or an ambulance from the city.

Violetta and mom photo: from personal archive

Three years Violett was saved by charitable foundations and ordinary people. But when the mother asks for help from an outwardly ordinary healthy child, this is often treated with distrust. “I suppose they collect money and buy a car for themselves, they will make repairs,” Elena heard and read to herself. And only one thing thought: "Let Violetta with her diagnosis and continue in the Ulyanovsk region." You can’t wish any of the fellow countrymen such and in a terrible dream.

The lawyer of the charity organization "Wind of Hopes" helped Elena write appeals to the Ministry of Health. But, when there were no peaceful drugs for the child, the “wind of hopes” advised Elena to sue the regional Ministry of Health. In the practice of the organization - won cases in several Russian regions. The lawyer helped Elena draw up a statement of claim and undertook to conduct a case for free in court.

On March 20, the court issued a decision in favor of Violetta and ordered the Ministry of Health of the Ulyanovsk Region to provide the girl with everything necessary. But due to the introduced restrictions on the coronavirus, the process stalled. Elena has not received a writ of execution in her hands. There were no solutions for the purchase of drugs. And on May 18, from conversations on the sidelines of the hospital, she learned that the Ministry of Health would appeal the court decision in a higher instance. Employees of the Wind of Hopes assured Elena that they would support her in court until Violetta began to receive food, without which she simply dies.

The “Wind of Hopes” helps its wards absolutely free - and before actual provision of power and medicines (sometimes the Ministry of Health even in no hurry to execute). But the fund itself really needs money and exists on donations. Please subscribe to any amount that is feasible for you! This is important for Violetta, her loved ones, for all 250 Russian children with SCC. Thanks a lot!