200 rubles for the healthy childhood: why on treatment raise money on the Internet?

200 rubles for the healthy childhood: why on treatment raise money on the Internet?

When Deputy Prime Minister Olga Golodets was perplexed aloud why parents of disabled children raise money on the Internet, Nadejda Tokarev has answered it with sharp verses. When to Petersburg have ceased to bring "Keppr’s" vital preparation, has reached the president. And to raise money for treatment of the daughter in the Czech Republic, has created group in social networks, advertised all diagnoses and declared an action: «Two hundred rubles for the healthy childhood».

And instead of a tykanye a finger has got the necessary sum of money and support of strangers from the different countries of the world. In group already 500 people – Alice’s friends who not once help, and support before each rehabilitation abroad.

200 rubles for the healthy childhood: why on treatment raise money on the Internet?

Hope and Alice

Our daughter was born in time, with good weight, in Day of Russia. Pregnancy passed well. I have gathered the whole 26 kgs. Even cars went round me and of collision with me were afraid!

So it has turned out that childbirth was difficult. Alice has choked, did not breathe at the birth. Already in reanimation it was clear that the brain has very much suffered from a hypoxemia. That with us will be farther and in what it will pour out, doctors were afraid to speak and made a helpless gesture.

Now Alisonya – the special child. It has a cerebral spastic infantile paralysis, a delay of the speech and psychomotor development, the mixed hydrocephaly of a brain. She is not able to go, does not keep balance, eats only the wiped food, does not talk and cannot serve itself. It with huge work is given the simplest movements.

My memoirs about the first year – noise in ears. So it would be desirable not to believe that you forget to breathe. Getting to children’s reanimation, you forget everything, than lived before. It would be desirable to fail through a floor, to fall asleep, be forgotten. To die.

Now it is absolutely not important, who is guilty: the incompetent doctor, the accoucheur or unsuccessful image the developed circumstances. The most difficult was to accept the child such what it is, without a brand of diagnoses. To accept that fact that the daughter – same, as everything, let even not similar to the standard norms. The longest first year we with the husband went to this understanding. Before Alisoni’s appearance in me there was a brief experience of communication with special children. But when you are the parent of such child – feelings others. Where more sharply. And from the child you will not escape, as from casually met stranger.

To such you do not happen it is ready – and we with the husband were not … Quarrelled because of despair and the inhuman fatigue, after all one feeding of the child took four hours. We catastrophically did not have physical forces and money – and occasions to swear in this condition were by itself. We could tell each other: «It is not pleasant – leave».

But nobody has left. It is impossible to escape from the child is a crime!

In one day we with the husband have sat down the friend opposite to the friend, and everyone has told everything that thinks, everyone has offered options as us to live further. It has helped. As a result to achieve success and to endure a grief it has appeared simpler together. Since that moment as there was Alice, we with it have fine changed the relation to life and values is us has pulled together.

200 rubles for the healthy childhood: why on treatment raise money on the Internet?

Single picket in the rain. To them even nobody left.

And after a while at Alisoni it was shown also epilepsy. And then before us doors – the rehabilitation centres, correctional gardens, sanatoria of Russia were closed. The matter is that epilepsy and Alisina a cerebral spastic infantile paralysis form – diagnoses contradicting each other on treatment. Treatment of cerebral spastic infantile paralysis can cause attacks of epilepsy and aggravate it (so consider at us in Russia), and during reception of anticonvulsive preparations from epilepsy the central nervous system and the child is oppressed lags behind in development even more. My daughter after the first reception of anticonvulsive medicine has laid down and has lain all day, without lifting the head. It still languid, gipotonichny, "braked". Abroad it treat. And at us, in our traditional program of rehabilitation – is not present.

And our child remained to lie at home unaided. We began to look for medical treatment abroad options. But in our family of money is not present. We live on credit. The salary of my husband leaves on our additional classes and food.

We tried to address in charity foundations, and one of them helped us. However it is necessary to understand that treatment is a way of life and Alice’s life. It should be rehabilitated four times a year. And funds help разово.

Then I have decided to create group in a social network with the name «At Alice there is a chance!», to advertise diagnoses of the daughter and to raise money on the Internet. It was morally difficult: almost anybody from acquaintances did not know about Alisinykh features. I was afraid that will point a finger. But what my surprise when instead of sneers and discussions we with Alisonya have got the warmest friendly support was! We were supported by friends from seven countries of the world. Wrote warm words, encouraged, wished success. I am infinitely grateful to these friends!!!

For half a year people have helped us to collect 157 thousand rubles. We were accepted by the Czech clinic. And it were our first excellent results. After the first trip Alisonya has opened the paralysed handle, after the second has started to hold better the head and to take subjects. And the main thing, further the Czech experts promise to put it on legs! It is said that, if it regularly to rehabilitate, she can go to kindergarten and to much to learn.

***

In February, 2013 the Hope has written the letter to Ministry of Health and addressed to Deputy Prime Minister Olga Golodets. It was the general action of the Petersburg mothers: they answered a question Golodets why the hi-tech help to children does not appear the Russian state and why mothers ask money for medical treatment abroad through social networks.

Here that the Hope, besides patient’s records has written in the letter:

«Certainly, in an operating mode, by right

To bring explanations the power tries.

And I by all means will answer MINISTRY OF HEALTH,

Why I was going to treat the child,

Why I raise for it funds

And as it has turned out that money are not present …

The nobility I want, it is interesting to me:

Well as my daughter was not entered in the budget?!

Drugs are registered – is not present in Russia,

The child, and what becomes blue without "Keppra"?

The salary of the father will master this means …

While suffer, a utility bill.

The child heavy, is a lot of diagnoses.

To treat fully doctors are afraid.

In Europe the road is open for the daughter

At level the highest. Go and treat.

But in it just also there was a hitch –

Work with heavy дитём I can not!!!

To pay the NECESSARY it is very difficult,

Therefore I is constant in a duty …

The father of the patient a dityonka works,

Though itself disability has long ago.

I AM A MOTHER! I WANT TO STAND FOR THE CHILD,

TO TREAT AND HELP, DESPITE OF EVERYTHING!

You want to think, a pier: «What mothers,

Ambitions – treat in Europe children» –

And us not to enter in an out-of-date framework,

I TO THE DAUGHTER WANT TO GIVE THE BEST TO THE!!!!!!

And it is honest – with grief that there, behind "cordon",

In many respects to eat best of all, the cheapest way, than at home!»

Ministry of Health of Russia has sent very prosy answer. Has reported: on treatment abroad the Russian children send at the expense of the state in case we have no similar techniques in in the country. And for Tokarevs as the option is Federal State Budgetary Institution Rossiysky the rehabilitation centre "Detstvo" where have already sent Alice’s documents on correspondence consultation.

– That have sent Alice to "Childhood" – the tragedy, – the Hope explains. – This centre can give nothing to my child. Those technologies and techniques which he offers, run counter to the diagnosis and indications of the doctor. One exercise machine to us not to try, as the child very small for it on growth, another is contraindicated, computer programs too it is impossible for us.

And here the ergoterapiya, voyta-therapy, thermal waters, vortical and carbonic baths, some other techniques – all that has given for the first time positive dynamics and hope of traficability – are not included into the list of services of this establishment. Of these types of therapy in general we do not have some in the country.

Under the existing law before sending Alice abroad, she should be put on inspection in the Russian hospital. And it is a vicious circle. Getting there, Alice falls ill at once (the child without immunity), at it are begun attacks, after them she forgets mother and the father, and we are compelled to be treated anew.

What turns out? Needs of my child and his diagnoses have not considered attentively!

As a result in the "Childhood" hospital Alice has not laid down, and the Hope has continued to raise money for the next trip to the Czech Republic.

And to extract vital for the child with epilepsy "Keppr’s" preparation about which it is told in verses, mother with the daughter had to reach the president of the country.

– Since February, 2013 "Keppra" have ceased to release in the Petersburg drugstores on a privilege. The city committee on health care has not taken care of uninterrupted timely providing disabled children with this preparation. In its hospitals too was not. And to lives of children including my Alice, danger really threatened.

I have started to write letters, to call, declare threat of life of children without a preparation. About "Keppra’s" shortage in St. Petersburg all Moscow, the Minister of Health, department of Ministry of Health of decrease in children’s disability and in the slightest degree involved instances knew. I even have written to the president of Russia and Presidential Administration personal letters. Only the Petersburg committee did not return a preparation nearly half a year! All this time we got medicine through acquaintances, sometimes just at the last minute when it at us already absolutely came to an end …

We with Alisonya left on single picket to комздраву. Stood with posters in the rain. But to us even nobody left.

Then I have brought an action. And then I was called by head комздрава to which I could not get on reception nearly half a year, with personal apologies for current situation.

As a result of my fight the president has given a personal assignment (!) in a month to take exhaustive measures for questions of regulation of purchases of medicines. And then "Keppra" have given to the Petersburg children!

Now the Hope raises money for a new stage of rehabilitation. She declared an action «Two hundred rubles for the healthy childhood». In group in social networks it is written: «If each of us offers to Alice of 200 rubles, a half of the necessary sum will be collected!»

On the Constitution day to Alice it was executed three and a half years.

***

– Certainly, the daughter has forced перекроить my life entirely, from the main things to trifles. Also I want to tell that the best events in my life began to occur thanks to the birth of the special child. I could realise myself as mother, the human rights activist, the wife, the friend. Because has not wanted to sob in a pillow and to feel sorry for itself. But only to operate! Cerebral spastic infantile paralysis, epilepsy, cold, a heat-spot on a bottom, worms – mothers worry because of everything on light. But! Only on mother depends, in what mood her kid will wake up.

Mothers! Never it is necessary to despair! Your children – the best even if they are not entered in someone’s framework!

 The group «At Alice is chance!»: http://vk.com/pomogialisetok

Alyona Bykova has written down

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