At seven years of Eugene Moses - cerebral palsy. She does not walk itself - only the hand or with special supports. Eugene - our old friend: it does not just help the forum users "New Kaliningrada.Ru" and fund "Do Good". We spent one day with the girl and her mother to find out whether there is life in Kaliningrad for children like Jack.
Zhenya's day begins with the fact that her dog Sonia licks her heels. Incidentally, it is very important for Eugene sensory experience. Eugene waited long Sonya. When she opened the box birthday, and there is a dog mom thought that the baby stopped breathing with delight. Mom calls Sonya "shaggy rehabilitation" - the dog can be hugging, stroking and tugging the ears, it can be led by the leash, throw her a ball and roll it on the bed, all this has a positive effect on motor function, and the emotional state of Eugene.
19 photos + text. A source.
Chief Assistant in Zhenya's family - the car. Without machines, most important journeys would Genet available. After all, despite the fact that she does not walk itself - only the hand or with special supports - life in her very busy. Jack is learning in first grade, has been playing the piano and singing, chess and checkers, goes to the pool every day and perform exercises from a course of physiotherapy. Last year, when the car was in the shop, my mother had to give up with Eugene from all classes, except for school, and almost half a year to sit at home. My mother does not complain about the hardships of life with a disabled child. She just quietly says: "accessible environment for people with disabilities in Kaliningrad there." Wherever there are obstacles to movement, Mom is his daughter, who weighs almost 30 kilograms, in her arms. The examples are not far to seek: a lift home in his wife's no room for the stroller, even children, not to mention special. Multistage descent the porch is not equipped with a ramp. About public transport need not be mentioned. What will my mother when Jack gets older?
While mom warms the car, Dad helping his wife to dress and make it down on his hands. I go to school in the village of the Island. Big Isakovo. "School of the Future" - one of the few schools in the area that can take children like Jack. There are ramps and elevators. And most importantly, there is the atmosphere in which the wife is treated as a special child, but not as a patient. She goes on a par with everyone, and it gives her the opportunity to develop.
Jack goes to the first class, and last year my mother took her in my best here also. Children open the door for Eugene, take her by the hand and help to walk, bring a chair when she needed to sit down and with the help of my mother pereobutsya - and frankly, with the childlike, without embarrassment or excess helpful.
Everyone is used to the fact that my mother standing beside Zhenya. For all it is - Aunt Marina. During lessons Aunt Marina at the door of class, but if the wife needs help, the teacher Lubov calls Marina, and she helps her daughter, for example, to reach the board.
In between lessons mom spreads orange carpet on the floor, and she is on it a few minutes - relieves back. Next, of course, and all the stack fits rebyatnya - how can you miss such a wonderful excuse to have fun.
When Jack came to school, she already knew how to count up to five and read by syllables. It is now almost behind classmates. Only writes slowly, with his left hand - the right to move hard.
Real salvation for Jenny and her mother - what additional classes are held at the school. Just why Jack has the opportunity to visit them - to wander around the city for groups and sections it would have been difficult even by car. And immediately after the lesson you can go down the elevator to the music class. Music on Mondays, Tuesdays, Wednesdays and Saturdays, Tuesdays and Thursdays - intellectual games: chess, checkers, and go. Piano Eugene deals the first year, and the main work is aimed at setting the hands. The right hand is doing badly, and before the training instructor flexing her. Later start the game, and Jack makes hand rainbow of notes "before" to the note "sol", seeking the note "A" for two black hills - "F-sharp" and "G-sharp", and when the teacher does not see, It puts pressure on the pedal - a little hooligans.
After a short break for lunch ("I do not want the cabbage!") Jack has been singing - choral and solo, and then - the way home, during which it would be good to get some sleep. Eugene does not sleep. Today it is "fairy just invisible" (if one that does not see, it does not mean that something does not exist), and through the magic pedal "resolves" plug - helps mum Marina hurry to get home. "And it works because - says mum - really becomes more free."
Family Eugene Moses lives in a room of 16 square meters with a cat, dog, fish, wall bars, exercise equipment "Motomed" gymnastic balls and other "equipment" necessary for Zhenya's activities.
Gene diagnosis set when she was 10 months. And since then - years of monotonous work, if not directed at improving Genis, then at least to overcome impairments. Every year at 4 rehabilitation courses, typically in Poland. In Poland - because at the local level, according to the mother, can not provide the intensity of treatment that need Genet. At the rehabilitation center in Warsaw within one month of a child engaged in daily for a total of 7, 5 hours and classes are held in the form of games. For example, exercise for hands: Zhenyu put in a hammock, swing, and from there it throws bags of rice to the basket. When, after one of these courses Eugene got on her knees, and she then began to hold a spoon, a happier person than mother Marina was not in the whole world.
Still need drug treatment - also 4 times a year: the so-called "chipping", 500 two-week course of injections for about 100 shots at a time. If painful skleromerny massage, which also need to be carried out regularly, Jack has learned to tolerate, then get used to the injections can - crying. And to the question, who she fears most in the world, Jack replies, "Lyudmila Anatolievna" - a doctor who makes injections.
Cerebral palsy can not be cured with one course. It takes many years of work. And a lot of money. Monthly rehabilitation abroad - from 200 thousand rubles, a course of injections - from 20 thousand. Parents marry - an ordinary family, the people of moderate means, and therefore are in constant search for funds, ready to provide them with material assistance. Given that very few funds taken for fees for children with cerebral palsy, and the fact that each fund can help throughout the year only once, the task of finding money for treatment - not an easy task.
But compared to what it was a few years earlier now made tremendous progress. Jack slowly, with difficulty and with the help of my mother, but runs can write with his left hand, read and live an almost normal life.
After high school, the girl is a little more than an hour to ensure that the lessons and do a little exercise physical therapy - rehabilitation course after every doctor gives her mother a list of exercises that necessarily need to perform every day. Today, according to the plan the treadmill, she stands with her grandmother because her house to put nowhere. After a 15-minute walking time to go to classes on adaptive swimming.
The city is only one pool, taking people with disabilities who do not take care of themselves - in the sports complex on Gorky, 87. But, according to coach Alevtina Alexandrovna, and then have enough problems. For example, water. Communal swimming pool - it involved both children and athletes, and guys like Eugene.
Sport standards for water - 26 degrees. For adaptive navigation - 32. The scoreboard - 29, therefore, the average. And yet: a few degrees higher - for athletes load on the heart, a few degrees below - and children with disabilities suffer from colds and
Here we have a specialized center - sigh Alevtina Alexandrovna - a doctor, a psychologist. "
Classes are free - a school of Olympic reserve, that is, there prepare potential participants in the Paralympic Games. And Jack is doing well: it has already won in their competitions. Previously, she was afraid, but now is not afraid of water. Swim itself, without a mother - her inflatable armbands. And famously dives into the water side of the pool - even I'm so scared.
Life - yes!
Classes in the pool from five to six, seven houses Eugene, her twelve-day marathon is over for today. You can tinker with your favorite Sonya and go to sleep to wake up again tomorrow at seven, and again - school, extracurricular activities, homework, exercise, swimming pool.
Time for the game Zhenya almost gone. In fact, she does not have children, if you mean by childhood carefree time with games and cartoons. But any relief in the schedule can throw Eugene back and negate the progress made over the years of work.
ICP - not a sentence. Ignoring the endless public lament about the lack of Kaliningrad accessible environment for people with disabilities, mother Marina is a daughter who can not walk on their own, a life that can be called normal. They know that this is possible, as we now know.