The disappearing boy

Eight -year -old Kolya Makarov has wonderful parents, a cozy house and a pack of friendly dogs. Only Kolya can never run around the yard with them: he disappears

We help Vera help

The Makarovs from Barnaul are a family of veterinarians. Alexey and Polina studied at the same university, former classmates. The hobbies of the guys were also similar. Alexei drove on a motorcycle, Polina was engaged in equestrian sports. Both tall, slender, beautiful pair. But among the general there was another thing: Alexei and Polina are carriers of the SMN gene mutation, which causes spinal muscle atrophy (SMA). And she manifested itself in their son. And in the most aggressive form.

Kolya was born in 2012, then the doctors already knew how to make a diagnosis correctly, but then the failure: there were no drugs capable of fighting the SMA, and the doctors did not really understand what palliative help could be in this case. One of the parents despair and lowering their hands. Someone, and the Makarovs among them, tried to save children in any affordable ways.

Sea buckthorn hair

Kolya - Mamino reflection. The same fair -skinned, with thick hair of sea buckthorn. His pretty hair really wants to stroke. But in the first minutes of dating, I keep the distance. The boy’s intelligence is completely preserved, he feels and understands everything. And when meeting with a new person, expectedly worried.

Kolya had to go according to the most prosperous scenario. Beautiful good parents who managed to find himself for the birth of a son (Polina and Alexei became a mother and dad in 27), a cozy house and a pack of friendly dogs - a dream of any boy!

Mom Polina plays with Kolya photo: Maria Gelman/VII Agency for TD

The Makarovs have four short -legged corgs. Recently, one of the dogs has been distinguished. And in the living room for her offspring, an aviary with soft rugs was arranged. Blazed woolen sausages sleep, pressing against each other. With what pleasure Kolya would be squeezed now! He, of course, can stroke them, but only if relatives take his hand in his own and do it together.

In the same way, parents are sculpting with their son, digging in kinetic sand, draw. Kolya, like all his peers, learns to count and read, learns from colorful books about the structure of the world, loves to listen to fairy tales. But he is not able to speak. It shows with a look what he likes and what does not, indicates the cards if they deal with him. The macarovs are allocated for toys and books for Kolya. They call it the island of treasures. Only outside the “island” there is nothing: neither skiing with slides, nor catch -ups with friends, walks on a bicycle and scooter, swing, campaigns and other things from which childhood is added up.

The first

“We are the first who [in the Altai Territory] took the child to the Ivl (apparatus of artificial ventilation) home. There was no other way to save Kolya, ”says Polina.

From the bedroom comes the noise of the device that breathes behind Kolya. Now with the boy a grandmother, mother of Alexei. Kolya is in the verticalizer, and they read the book.

Mom Polina and Kolya photo: Maria Gelman/VII Agency for TD

In Kolya, the symptoms of the disease appeared early, which is characteristic of the cubes of the first type (often children with smell 1 die up to two years). At about two months, Kolya began to weaken, the arms and legs went limp. The doctor of the children's hospital suspected SMA, and the geneticist, who was supposed to prescribe tests and clarify the diagnosis, dismissed the family.

“And you left, imagine, on vacation! We were in shock, were confused. I had to do a paid analysis in Moscow. He confirmed everything, ”recalls Alex.

“We lived in the country. Kolya, due to the fact that he could not swallow saliva, began to choke,-Polina picks up. - They called an ambulance, and there they replied that they would not go to the cottage to us. It was necessary to go towards them to meet the GAI KP at the entrance to the city. We almost flew! It’s good that there is a car. The ambulance met us. Doctor: “What are you, mommy! He just wants to sleep with you!” We reached the second children's infectious diseases hospital, and there Kolya stayed for six months.

In the same resuscitation, to Kolya, another breast baby with SMA. According to the Makarovs, his parents never came to him. About two months and two months, the child died in complete solitude. It was unbearable to see it.

And the Makarovs took resuscitation every day by storming, on duty were at all for several hours.

“We saw how disposable consumables are used several times in the hospital, how some nurses behave with children. One of them could be rely on, and in any case, for someone.

Wall with photographs of Kolya and his parents photo: Maria Gelman/VII Agency for TD

I remember once entering the intensive care of the aunt with a plate of porridge and a spoon. It was she who was about to feed Kole, because he is “an adult already”. And he has a probe, you can only introduce food with a syringe. The probe can also be used in different ways. You can smoothly introduce the mixture so that the stomach is gradually filled. And you can immediately squeeze everything out without ceremony. So some nurses did. ”

First, Kolya was connected to the Ivl through the nose through the tubes. But the walks began from the mask. The Makarovs learned that prolonged ventilation of the lungs suggests a tracheostoma, insisted on a replacement. The main war was played out to get home.

“It became clear that it makes no sense to be in intensive care. Cole artificial ventilation in Kolya will be lifelong. The IVL apparatus and other equipment for the home helped us to buy the Vera charity fund. But it turned out to be half. It was almost impossible to get from the doctors that they set up our device and prepare an extract. No! They said that the child would die without medical care. As a result, we reached the president, connected friends. The local Ministry of Health began to communicate with us through his lawyers. At some point, progress was outlined, and then sharply: “What are you? We won’t give it anywhere!” And everything is new. Two days before Kolina, we brought him home. And they were wildly happy that now we are together. ”

Without a chance

The first drug for the SMA "spinraz" in Russia was registered in 2019, and Kolya is unlikely to help. Manufacturers of this medicine recommend therapy in the first months of life. Yes, and the Makarovs do not hope to knock out money from the state on the expensive “spinrase”. In Russia, even babies with SMA are refused it.

But at the beginning of 2020, the family had a chance to try therapy in the program of free pre -registration use of the drug "Figlash", which was launched by Rosh. But the Ministry of Health of the Altai Territory did not allow Makarov this chance to use.

Kolya's father makes him a charge of photo: Maria Gelman/VII Agency for TD

“Our doctors, namely, they had to apply for an application, did not want to take part in the action. We could not persuade the main freelance neurologist [department] Dmitry Vladimirovich Parshin. Either they were afraid that after this medicine we would force the state to pay further treatment ... I do not know. And we talked with him, and Olga Hermanenko from the Family SMA Foundation. It is useless, ”Polina laments.

The palliative assistance of officials also almost does not interrogate. For them, children with SMS do not live, and do not die. The excuse is the same: too expensive.

For example, a special nutrient mixture for Kolya costs 15 thousand rubles monthly. It is needed because the boy eats through the probe - he has too weak chewing and swallowing muscles.

“Our Ministry of Health provides a mixture, but rarely, unsystematic. With supplies to the IVL apparatus, and they also cost a lot of money, they do not help us. As for the strollers, children with a grease are purchased by those that do not fix the body, and without fixing the child will not strengthen them. And so on many points ... It is almost impossible to cope with this load on your own, ”Polina does not exaggerate at all.

Kolya's father carries him to the room after a walk photo: Maria Gelman/VII Agency for TD

Since 2013, the Makarov family has been patronized by the Vera charity foundation - the largest fund in Russia that helps hospitals and incurably sick children. With Vera, the Makarovs had a feeling of solid soil under their feet, each “tomorrow” no longer causes a former alarm.

The fund took over the load on the most expensive articles. He purchased a verticizer for leisure from long -term lying down and medical devices so that parents could monitor the well -being of their son (two pulsoximeters), cleanse him the respiratory tract (aspirator and battery for him), and ventilation of the lungs in the event of the failure of the Ilv device (an outpatient bag). The fund regularly supplies Kolya with a nutrient mixture, consumables for the IVL apparatus, tracheostoms, and power probes.

And “Vera” is consultations on various issues, round -the -clock psychological assistance and legal support. The fact that Kolya’s parents last year achieved from the regional Ministry of Health the additional apparatus of Ivl in case of failure of the current (old apparatus - “peer” of Kolya) is largely the merit of the lawyer of the Vera Foundation Anna Povalikhina. She advises hundreds of families so that they can receive at least part of the help that relies from the state.

To visit elephants

The Makarovs make a lot of efforts to fill the life of Kolya with vivid impressions. Every evening, making a schedule for a day, they try to come up with something new.

- When a circus with elephants came to Barnaul, we, through the veterinary service, agreed with his leadership on the excursion to show the Kal of the animals, feed them. They took bread, bananas with them. Elephants, it turns out, love. Kolya was shocked.

- Polina, I was afraid that I would come to you and see a bloodless mother. How did you learn to live with this?

- We accepted it. About how much Kolya will be with us, I do not think. The main thing is that today he is with us and he is not alone. Of course, something bad can happen tomorrow. But this happens to any person.

Kolya on a walk near the house photo: Maria Gelman/VII Agency for TD

Polina now plans to make a wide doorway in the living room, from where the exit to the back yard.

“I want to put a large glass door there, and plant a Christmas tree in the courtyard to dress it in winter. When it doesn’t work out with Kolya to go out, I will bring him there in a stroller. I hope he will like it. "

Now Kolya will sleep, Polina puts him in bed, and we should leave.

And it hurts to part. For the first time I say goodbye to the family in which the child quietly disappears. Every minute, right now. I'll leave, and this will continue. The forecast cannot be changed. I need to smile and wish Polina all the best, and a lump is in my throat.

There are people who know how to find the right words and hold tightly by the hand so that the one whom the catastrophe does not pass does not go crazy. There are people who will take on thousands of small and major affairs, so that the family of a child who is almost a facet is with him, and not darted in search of ways to alleviate his suffering. The work of these people is priceless. But it is impossible without money, its existence is completely dependent on us. Please arrange a one -time or monthly donation in favor of the Vera Foundation. Fifty, one hundred, three hundred rubles ... - No matter how difficult you are. Families that have a meeting with death cannot be left without support. One on one is too scary.