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INESSA (A “Different” Childhood)
PLEASE HELP: SABRIL for a Russian epileptic girl (West's syndrome)

Childhood is a wonderful and magical time. Childhood means roly-poly cheeks and plump legs, happy laughter and the whole world in widely open eyes. Childhood means deep blue sky where babies soar on their dads’ arms, like birds; it means broad carpets of sweet-smelling grass under babies’ bare feet; it means Mum’s quiet fairytales that babies love to listen to in their cozy beds as they go to sleep; it means all the World being your and only your domain.

This nice little girl’s name is Inessa. If you saw the gentle curves of Inessa’s little cheeks and her wide blue eyes, you would hardly believe Inessa is severely handicapped. You would not believe that her eyes hardly see anything, and that her nice-looking plump features are the result of several courses of intense hormonotherapy. This little girl has so many diagnoses that would seem a lot for even a crowded ward, but EPILEPSY (WEST'S SYNDROME) is the most dangerous and the most dreadful one.

Seizures torment this tiny girl unrelentingly. Not just one or two — this girl has 600-700-800 seizures in one day! The exhausting seizures and the accompanying hypoxia leave Inessa’s brain without enough oxygen, meaning that she can’t develop properly. After a series of exhausting seizures Inessa loses all the skills that took so much to develop. This 4-year-old girl is unable to move on her own, unable to hold things in her hands, unable to understand speech, unable to recognize people or toys. And if only her condition could be alleviated, if only the seizures could be stopped for even a short time by carefully selected drugs, Inessa would have a chance for normal development and rehabilitation, a chance for a little bit of happy childhood, a chance for a little bit of the World, a little bit of Life.

But the little Russian town of Usinsk near the polar circle, where Inessa lives, lacks anything that could help. No qualified medical personnel, no medical or rehabilitation equipment, no drugs, and no well-paid jobs to earn the money that would buy all this. The girl should be taken to Moscow for diacrisis, proper treatment and drug selection. But even treatment in Moscow would not give Inessa any chance of recovery. There have been no cases of successful rehabilitation for this disease in Russia. All the cases of recovery that this family has heard of were in Western countries.

Being a parent of a handicapped child is a separate exhausting and unrewarding occupation. It is an uphill struggle against all the odds that you fear most to lose, teaching yourself each and everything that would help. But Inessa’s parents never lose heart. They have been struggling during all these four long years as hard as they can, resisting all the sidelong glances and defying all kinds of dreadful prognostications that were given. They are doing their utmost in fighting for their little daughter’s life and health.

Igor, Inessa’s father, spends months away from home, working in shifts in remote northern areas to earn more money for his family. He spends his free time inventing and making vital rehabilitation tools for Inessa. He makes those from garbage and refuse and anything else that he can find as the family spends all the money on drugs for Inessa. Marina, Inessa’s mother, spends all her time patiently and lovingly helping their child to live through this kind of “different” childhood.

But the little money Inessa’s father is able to earn and the immense patience of Inessa’s mother are far from enough. Everything is against them, even time, which is going on, ticking away hours, days, and months, and gradually leaving this family without hope.

But still they live and believe that a miracle would once happen.

It once did. In fact, three miracles happened in a row then:

The first miracle was that one doctor told the family off the record about one modern anticonvulsant drug, SABRIL, which has not been approved by the Russian Ministry of Health, and consequently cannot be produced in Russia or imported into the country.

The second miracle was that the family once managed to get SABRIL from Germany.

And the third and the greatest miracle was that SABRIL helped Inessa.

SABRIL brought the seizure rate down by 90% (about just 80 seizures daily instead of 800)! As the result, Inessa was able to sleep peacefully, without seizures suffocating her every hour. The little girl’s quality of life improved dramatically, she even learned to sit up on her own.

SABRIL is a precious, priceless cure for little Inessa in all respects. It is priceless because it is not possible to get hold of it in Russia, no matter how much one could be prepared to pay for it. It is priceless because Inessa’s parents lack the money to pay for it, as Marina spends all her time taking care of her daughter and is therefore unable to be employed.

It is also priceless because if the little girl is not given SABRIL in due time, status epilepticus would develop, threatening irreversible brain drowning.

Exhausted by visits to Russian medical institutions and authorities and tired of trying to elicit help from officials to procure this drug which proved vital for Inessa, Inessa’s mother has decided to appeal to the last and the supreme authority — ordinary people living in countries where SABRIL is produced or sold.

One pack of SABRIL costs just over 100 euro, which is huge money for Marina and Igor, and gives little Inessa almost one month of life. One month, or thirty calm nights and a tiny bit of hope.

SABRIL is a drug that Inessa will need all her life, so Inessa can’t have too much of it, and one day there may not be enough.

There are other anticonvulsant drugs that have not been approved by Russian medical authorities and are therefore not available in Russia at all. Import of these drugs is prohibited; they are not used in hospitals and clinics. But a combination of those drugs could produce miraculous results for Inessa, and Western practice includes cases of full recovery. In order to make this combination for Inessa possible, the girl would need to receive medical treatment in a Western hospital. But this poor Russian family with a handicapped child does not even dream of it.

It is odd and dreadful to realize that some childhoods are not happy and cloudless at all. There are those “different” childhoods, which are exhausting, unbearable, hopeless and bleak.

But hoping for a miracle is part and parcel of all childhoods. For in the world of childhood all adults are magicians.

Phone of the attending physician of neuropathologist Koskelajnen Irina Konstantinovna (82144) 46-1-36
Photos of the child http://www.7ya.ru/photos/private.aspx?RubrID=40435
Photos of documents http://www.7ya.ru/photos/private.aspx?RubrID=56631
Post address: Komi, 169711 Usinsk, street Stroiteley 9 "b" apartment 99
Inessa’s mother -Golitsyn Marina Ivanovna

Выложила кое-какие подтверждающие документы http://www.7ya.ru/photos/private.aspx?RubrID=56631
Пароль к папке inessa.Это пока начало,не хватает свежей выписки,ее пишет врач.Телефон врача для подтверждения информации (82144) 46-1-36 Коскелайнен Ирина Константиновна

Так никто и не подскажет адреса газет и благотворительных организаций? Пожалуйста,поищите..Может в инете есть,я к сожалению не владею никаким языком.кроме русского :(

Большое спасибо за подсказки.Но как мне узнатать адреса этих газет?
И кроме текста статьи туда наверное сразу надо какие-то подтверждающие документы послать,что это все правда,а не мошенничество ?И как это сделать,если эти документы на русском?