He knows, what is pain

Rustam is fourteen years. He was born with damaged skin, the whole body was like one big wound. The boy has a severe form of Epidermolysis Bullosa. It is a genetic disease in which the skin is so defenseless, that every touch hurts it, causing severe pain. Ther is the method to protect fragile "butterfly". For this special adheres to the wound patches, soft bandages and ointment for the treatment of wounds is needed. But they are very expensive.

Rustam - the first and long-awaited child in the family of Tymoshenko. From birth, he lives with extremely difficult and, unfortunately, an incurable genetic disease: a form of dystrophic epidermolysis bullosa. All the boys body covered with painful wounds, fingers on arms and legs are accreted, tongue half stuck to the upper part of the mouth. Young parents were shocked by the diagnosis of their newborn son. They do not even know if Rustam survive.
- When I talked to the first Rustams doctor, who diagnosed it, she said: "If these kids live up to two years, which means he will continue to live." But nobody did not giveis guarantee him to life, because the child was very "heavy" - says Lyudmila, mom of the boy.

The first three monthshis of Rustams life he was on treatment, and then the doctors let him go home, advising parents to lubricate the wounds on methylene blue aqueous solution and bandage bandages. But ordinary bandages dry on the skin for a new dressing, they need to be soaked and remove carefully. Without injury to his extremely sensitive skin it is not complete. This went on for several years.

- We live in a small town, where no one had ever heard of such children, and especially about their treatment. And it seemed for a while that Rustam is the only one in the whole world, - says Lyudmila. - Once I went to my husband and asked, "Why did our son and we have such a punishment?" And he replied: "This is not a punishment, it's a test. We have no choice, we have to deal with it. We'll be fine." And then I come to terms with what had happened.
It soon became clear that Rustam was not the only one in the world. Information on Epidermolysis Bullosa, an unknown disease with a complicated name, collected bit by bit until you hear about the first Ukrainian specialized medical center for patients with epidermolysis bullosa - "butterfly children". Health Centers opened on the initiative of the International Public Organization "Dermatologists - Babies" Centre "Debra-Ukraine" and support "Okhmatdet". It is here, Rustam receives the necessary professional care and Lyudmila, at any time can get expert advice, as well as communicate with other families with "children-butterflies."

Now the boy is fourteen, and only recently, the family began to use special bandages that do not stick to wounds, healing ointments smeared. In Ukraine, they are not released, and the parents are forced to buy imported products for wound care, which are very expensive. On the treatment of wounds, bandaging Rustam, a day takes about four hours. painful procedure, severe, often the boy screams. If you do not bandage fingers, they will begin to coalesce. If you can not handle the wound, they will fester and bleed.

- He knows what pain is, and knows from childhood - says Lyudmila, once again, bandaging Rustams hands. Every month on the treatment of Tymoshenko Rustam family spends more than 20 thousand hryvnia, and this is the minimum, because the complexity of the disease requires a lot of money for treatment. In addition, twice a year, he needs to go to the hospital, and at least once a year to go to a sanatorium. Money for all is simply not enough. Besides, Rustam has a younger sister, that parents, too, need to grow and put on her feet.

Rustam very loves his younger sister Masha, as she did. They spend much time together, sometimes ride a bike, it is important that all games were calm not traumatic, because the slightest negligence on the boy's body, new wounds, and with them a new pain.

Rustam - a very clever boy. From the first to the seventh grade, he graduated with honors. Like any child, he has a dream, he wants to become a programmer, and is already making the first steps towards the dream - to create a few test sites.

- Last year, in the city were the exhibition of motorcycles, I really wanted to see it, but the money to pay for the entrance was not. Rustam saw that I was upset, took me by the hand and led to the show. And along the way, he said he earned 950 UAH by selling the site that wants to pay for the entrance to the exhibition, only for me to smiled. We stopped, and I began to cry.
Special wipes and not get caught in the wound plasters, dressings, soft bandages, ointments and vitamins are at least a little to facilitate such a complex life of the boy. Only all these bandages and medicines are very expensive. And others can not be used. Parents Rustam have no such money. We can help the boy.

Name: Rustam R. Tymoshenko, May 3, 2002

City: Kiev region, Obukhov

Diagnosis: Congenital Epidermolysis bullosa, dystrophic form