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Nizhelskiy Daniil, 4 years old

Date of birth: 5 October 2011.
Voronezh Oblast, Kalatch town.

Diagnosis: Epilepsy, Dravet syndrome (also known as Severe Myoclonic Epilepsy of Infancy, SMEI). There is only one medicine which can relive the boy’s suffering — it is called ‘Diacomit’. But the drug has not been registered in this country, and its cost is very high. Because of these major factors Daniil is not provided with an opportunity to take the medicine. The family can hardly afford it. They need your help in raising EUR 12 192 to pay for the medicine. This course of treatment will enable the boy to spend another year without the epilepsy attacks.
9 March 2016

Daliil is a very brave boy. He is afraid neither of injections, nor of the monsters hiding under his bed; the spiders and the darkness will not frighten him as well. But he cannot find enough courage to do only one thing — to stop holding his mother’s hand.

Daniil suffers from Dravet syndrome, Epilepsy, which is caused by a gene mutation. When the boy was very small he had the attacks quarterly, which is quite rarely. He does not remember them, of course. The doctors did not pay much attention to them, because they thought the attacks would stop within a few years. But as the boy was growing up, he started to suffer from the attacks more and more often (sometimes trice a day). This is something that cannot be forgotten — you are falling down and losing yourself, you feel pain... the only thing which can stop the pain, can pull you out of it and bring back to the world is your mother’s hand, which is steady and capable. There was the time when the boy was permanently holding his mother’s hand for half a year. This way he was taking a bath, was playing and sleeping... he must have been scared that he would stay ‘there’, in the place to which he falls during the attacks. Nothing could more frightening for the boy.

When the illness was diagnosed correctly, and the appropriate treatment was recommended, Daniil’s life did not change drastically. It turned out that ‘Diacomit’ - the only medicine that can relive the suffering — has not been registered in this country. The second-hand dealers sold the family some packs of the drugs, but its price was even higher than the real one. Nevertheless, the boy’s state of health has improved after the course: he started to go outdoors; he made some friends. But he did not stop holding his mother’s hand. He must have felt that the attacks would come again and was afraid of them. And, unfortunately, it happened so. The medicine ran out, no money left; so the attack came back again.

His parents will not manage to buy ‘Diacomit’ without any help. Daniil’s father is the only family member who has a job. He is a driver; he is on a salary of RUB 30 000. The whole family is living on the income. There are four members: the parents, the elder brother is a student, and Daniil who always has to take either drugs or courses of treatment and rehabilitation. The father is at work all day long; he has no opportunity to spend any time with his children — but it does not solve the most serious problem. They still do not have enough money to buy the medicine for their younger son; at the same time, it is vitally important to buy it. Daniil’s mother cannot keep up working, as she has to look after her younger son who is still holding her hand.

The family needs EUR 12 192 to buy the medicine for a one-year course of treatment. This sum is really colossal for the family. The parent will never manage to collect it on their own. But if we lend them a hand, the problem will be solved. And Daniil will get a chance to grow up a healthy boy.

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