Second wind

Text: Olga Pavlova Photo: Olga Pavlova

Photographer Olga Pavlova met with children who could not survive without an apparatus for the artificial ventilation of the lungs

Text: Lida Moniava, manager of the Vera charity foundation

SMA - spinal muscle amyotrophy, one of the most common genetic diseases. It occurs due to a mutation of a gene responsible for protein, which supports normal muscle contraction and controls the movement of the limbs. Children with the first, the most severe form can not go, sit, pick up a toy, and at the age of two years they refuse the muscles of the lungs, which is why the child stops breathing on his own.

Doctors can connect an artificial ventilation apparatus to a sick child (IVL) - first through a mask, and then through a tracheostoma (tube in the throat). In this state, the children understand everything, everyone realizes, but they cannot say anything, only with their eyes. In Europe, IVL devices are installed at home and, as a rule, parents are not worth anything. You can live like this for quite some time: in Italy a child lives with SMA1 on the IVL apparatus, who is already 18 years old. Parents are also offered another option - palliative: doctors give the child medicines that facilitate torment, but do not connect the Ivl. So the child can live for no more than a year and die a natural death.

When a child with SMA is born in Russia, doctors explain to the family that treatment does not exist, and they can no longer help. Parents return home, cry, and then most often they begin to convince themselves that the doctors were simply mistaken. They go to the healers, in monasteries, but one night their child stops breathing, blue, they call an ambulance, the child is taken to intensive care. The next day, information appears: he is alive, unconscious, on the device of Ivl. Every day, parents come to the resuscitation door and ask for a child, doctors can let them down for 5 minutes, they can let them down for an hour, they may not be allowed at all. It all depends on the shift on duty. A month passes, another. Parents find on the Internet forums on the SMA, where they read that you can take the child home with the IVL apparatus.

Many families with seriously ill children become believers. Photo: Olga Pavlova

In Moscow there are two resuscitation in which doctors help parents make a list of the necessary equipment - the rest most often say that this is impossible. But even with a list of equipment it does not become easier to live: all the necessary devices cost one and a half million rubles. Parents turn to charity funds, they begin to raise funds. It happens that while parents collect money for the portable apparatus of Ivl, children spend more than a year in intensive care.

In April 2015, on a direct line with Vladimir Putin, the president of the Hospice Foundation “Vera” Nyuta Federmeser asked the question: “There are about two thousand children in Russia who cannot breathe on their own and will be riveted to the apparatus of artificial ventilation of the lungs. These children live in intensive care at the public expense, do not see their mother, do not see peers, do not develop. They die ahead of time, including from loneliness. Nevertheless, more than 200 families have already taken away such children home as this happens around the world, but these children do not receive help from the state. Both the apparatus for ventilation, and consumables should be bought for it independently or at the means of philanthropists. The Vera Foundation has more than 60 children. At the same time, when such children get home, it is beneficial for hospitals - after all, the bed and the Ivl apparatus are released in intensive care. We ask to organize for these children free temporary use of refractors and artificial ventilation devices. Their life depends on these devices, and they want to be at home. Thank you". The president replied that he did not know anything about it, but he would give the necessary instructions. Four months have passed. Nothing has changed.

Sonya Zyryanova

Sonya Zyryanova has been living at home for almost a year. Parents are used to the apparatus and are no longer afraid to leave home. Photo: Olga Pavlova Sonya spends all summer in the country. Here is real life: Sonya saw a mole, tadpoles in a jar, flies, ants and many more, all interesting things. Most children like Sonya have been in intensive care all their lives, because not all parents can find money for the device. Photo: Olga Pavlova Behind Sonina stroller, a stand with the Ivl apparatus drives the country site. Photo: Olga Pavlova While Sonya is studying the world around him, his parents keep an outpat of an outpatient bag ready. The “ambush”, as his parents call it, should always be next to the child: when the IVL device breaks, parents need to “breathe” for the child before the ambulance arrived. Photo: Olga Pavlova It is difficult for families with several children to pay the same attention to the sick child and healthy. But Sonya and her brother Stepa have a good relationship. Photo: Olga Pavlova

Sasha Ioffe

Sasha Ioffe, like other children from the first type, does not know how to cough. This is very dangerous: at any moment, the child can get pneumonia and die. Parents have to buy it very expensive (in Russia it costs 600 thousand rubles), a coughing man. Photo: Olga Pavlova Children with tracheostoma can go outside only in warm weather, when the air temperature is above 20 degrees. Photo: Olga Pavlova With smell, 1 children do not know how to swallow, and parents feed them through a tube. Sasha’s mother has to insert Sasha probe more than five times a day to give water, medicines or food. Photo: Olga Pavlova Parents of children with SMA are always scared that the next children will have such a diagnosis. Double happiness - when a healthy child is born. Photo: Olga Pavlova There are no cats in intensive care, and at home a child can communicate with animals. Photo: Olga Pavlova

Sonya Prize

Before resuscitation, Sonya was an ordinary child, smiled, rejoiced at her mother, played. Photo: Olga Pavlova To pick up the child on the Ivl apparatus, the apartment has to be equipped as a ward in intensive care. If someone in the family is sick, you need to walk around the house in a mask. Photo: Olga Pavlova In a child, a heart rate monoximeter should always be connected to the IVL - a sensor that measures the level of oxygen in the blood. If the IVL device is broken or the tubes are accidentally disconnected, the pulsoximeter signals the problem. Parents prefer when pulsoximeters squeak as louder as possible. Photo: Olga Pavlova Mom "breathes" for Sonya with an output of outpan. Photo: Olga Pavlova Sonya and her brother Dan. Photo: Olga Pavlova If the Vera Foundation did not help buy the Ivl apparatus, Sonya would have forever remained in intensive care - one, without mom. In Russia, parents are forbidden to be in intensive care near children. Photo: Olga Pavlova Sonya was discharged from resuscitation less than a month ago. Photo: Olga Pavlova

Help easy!
Right now you can send an SMS with the word children and the amount of donation to a short number 3443, for example, "Children 500".
Or make a transfer from a bank card: http: // www. Hospicefund. ru/Help/
PayPal Foundation "Vera": Fund@hospicefund.ru
Thank you!