Translated material
Twenty years later
Arisha barely turned the year when the doctors told her mother: "Now she is ours." Bearing in mind that the girl will no longer come out of the hospital. The most terrible nightmare Arishina was repeated: twenty years ago she lost her first daughter. And gave birth to the second, not knowing that it was in genetics
Help I believe in a miracle help“What does“ are ”mean? Do you even allow the thought that it will become better for her, that she will return home? " - Tatyana watched as a resuscitation doctor connected the apparatus of artificial ventilation of the lungs to fresh tracheostoma on her one -year -old daughter's neck. The brain refused to understand the words of the doctor. It pulsed in my head: "This cannot be."
Tatyana and Arisha photo: Alexander Matveev for TDThe first bells rang when the girl was three months old: Arisha did not eat well, did not hold her head, almost did not take her legs and was very weak. Tatyana went to the doctors. The neurologist dismissed over and over again: “Do not bother, mommy. Everything is fine with you. Will grow. Will catch up. "
Not bothering did not work. The Yumatovs gathered themselves, without directions, flew for examination to Moscow. Tatyana, coldly with horror, was waiting for the doctors to say. She already understood that she would hear, but did not stop repeating, like a mantra, in a circle: “It cannot be, it doesn’t happen.” The diagnosis was named the same one from which the heart stopped: spinal muscle atrophy of verdniga-Hoffmann.
Tatyana and Arisha photo: Alexander Matveev for TDArishi had a smell of the first type - the most severe form. This is a genetic hereditary disease in which a violation of the function of the nerve cells of the spinal cord occurs. It leads to the progressive development of weakness and muscle atrophy. Children cannot sit on their own and hold their heads, gradually lose the ability to swallow and even breathe on their own. There is no treatment. The forecast is negative.
There was no strength to believe in the diagnosis. The Yumatovs returned home to Kaliningrad. They tried to live as if nothing had happened. But every month Arisha was getting worse. There was shortness of breath.
Arisha photo: Alexander Matveev for TDThe first birthday was celebrated with the family: a cake with one candle, a tiny and such a beloved girl in an elegant dress. Ambulance. Resuscitation. Baby entangled with tubes and wires. Arisha was intubated and connected to the apparatus of artificial ventilation of the lungs. Diagnosed bilateral pneumonia.
Arisha photo: Alexander Matveev for TDIt seemed to Tatyana that she herself stopped breathing. Closed resuscitation door. Doctors who shrug. Her most terrible nightmare was repeated.
In one funnel
Tatyana turns the pages of a large photo album. 1999. An extract from the hospital. The first bathing. The first walk. The first linen curl. Angelusha is sitting in a stroller. On a bicycle. Her first birthday. In the arms of grandparents, aunt and uncle. The whole large friendly family is together. Tatyana turns the last page, freezes for a moment and slamms the album.
The last page is the worst. 2002. Cemetery. Double black monument. In one photo, a little girl. On the other - a very young woman. Tanina daughter and tanina mother.
Photo of Angelina from a family album photo: Alexander Matveev for TDThey left one after another with a difference of several weeks. Mom-at 45 due to oncology. Angelina - at three years old from bilateral pneumonia. The daughter could be saved if the doctors had medications and equipment, which are now - this thought will torment Tatyana all her life.
“We just took it into intensive care, and that’s it. We were not allowed. It was not connected to the Ivl. No sucks and rings. She just lay there alone and died for a week. If there were people next to us then people like now in “I believe in a miracle” ... ” - as the spell repeats Tatyana the cherished“ if ”. Twenty years ago, there was no information about the spinal-muscular atrophy. Doctors did not give forecasts and recommendations. What to do? How to live? How to make life easier for a child? No: "Live, we will observe."
They drove their daughter for massages and physiotherapy. Nothing helped, but young parents did not despair and tried new options. It is now Tatyana understands that Angelina had the second, more light type of SMA. She just could not walk herself. They did not do genetic tests at that time: the neurologist made the diagnosis after muscle biopsy.
Photo of Angelina from a family album photo: Alexander Matveev for TDThen no one even warned them that this could repeat. That everyone needs to do a blood test. Tatyana recognized all this in twenty years - being with a sick Arisha in her arms. “On the other hand, if I learned about everything then, I would never have decided on the second pregnancy. And I would not have a son, ”says Tatyana.
Artem was born five years after the death of Angelusha. A completely healthy boy. The Yumatovs exhaled. And when the son grew up a little, they decided that they still needed a baby. Arisha was born.
“She is alive. Today, now "
Bright room with windows to the floor. Outside the window, the garden, trees, birds sing. A chic, as if plush, cats, looking imposingly around the room, looks at the mistress. On a high wide bed, the blond beauty Arisha lies like a princess on a throne. Bows on curls - like a small crown. Around at the distance of an outstretched arm - toys, multi -colored mermaids, felt -tip pens, coloring. Arisha is soon four years old.
Arisha photo: Alexander Matveev for TDShe looks enthusiastically “Smesharikov”, then notices her mother and blurred in a smile. “Arisha, where did you get such a chic manicure from? I ask, touching a tiny handle with bright red varnish on the nails. - Did mom make up your mother? " Arisha squints cunningly: "Dad."
“Papa”, like other individual words, works clearly for Arishi clearly, but so far even parents can understand not everything said. Arisha began to speak recently, after classes with a game therapist from the field palliative service of the Fruppolo House.
The children's hospice “Fruppolo House in Kaliningrad was created by the charity center“ I Believe in the Miracle ”. “What has been happening to us for the past two years is a real miracle and is,” says Arishina Mom.
No, the apparatus of artificial ventilation of the lungs is still breathing behind Arish. And the cure for the lubricants has not yet appeared. In this sense, a miracle did not happen to the Yuman. Nevertheless, a miracle happened: Arisha became the first child on the Ivl apparatus in Kaliningrad, who returned from the hospital home - after a year in intensive care.
Arisha photo: Alexander Matveev for TDChildren for Ivl have been living in the hospital for years. In four walls. With visitors on the schedule and medical staff if necessary. Doctors refused to write Arisha home, did not believe, resisted and did not want to take such responsibility. The struggle for a little girl was several months. Parents wrote letters to the Ministry of Health and the Presidential Administration, the case was under control by the governor. The family was helped by a whole team of lawyers, doctors and volunteers of the Charitable Center “I Believe in the Miracle”. The center helped to buy the IVL device and other equipment so that Arisha could be at home.
At home, with parents and brother, Arisha blossomed. He goes to visit his grandmother with his grandfather. Rides at sea. I was in the zoo. Communicates, plays, grows and develops, like all children. “I do not regret at all that I took her home. If there are prospects for recovery, then the patient is fighting, and if not, they consider it superfluous. They say in the face: “Why flounder, you know what will happen.” But the child is alive. Today. Now. And I want not to be tormented, so that it is convenient, it doesn’t hurt. ”
“We would never have got home if we hadn’t helped us,” Tatyana thanks everyone. For donations gathered by ordinary people, I “believe in a miracle” acquired for Arishi all the necessary equipment and even a special stroller with a mount for the IVL apparatus. Monthly the center provides the girl with the necessary consumables and special power supply from 70 to 100 thousand rubles.
Arisha photo: Alexander Matveev for TDThe Fruppolo House is an exit palliative service to help seriously ill children created by the charity center “I Believe in Miracle”. She was named so in honor of the Superhero Fruppolo Foundation invented by the small wards. In the care of the service, several dozen children who need constant support. Not a single family does not pull such expenses alone. They really need our help.
Money needs “Fruppolo House” to pay the labor of specialists: doctors (neurologist, pediatrician, stomatherapist), nurses, social nannies, psychologists and medical lawyers who work with families, as well as for the purchase of equipment and consumables. Please support the House of Fruppolo House. Any amount, any, even the smallest, monthly donation is a chance for a child to live, breathe and see mom next to it.