Knowing Your profound respect for and sympathetic attitude towards socially vulnerable groups of society of the Republic of Kazakhstan, Your responsiveness and kind-heartedness, I make no doubt that You will appreciate my achievements and make a contribution to my social project.
Within the framework of this project it is planned to build a Boarding house of Republican importance for living and sojourning of physically disabled children where parents from any place of Kazakhstan can leave their children under the care and supervision of experienced specialists in order to find free time for restoring their health, having a rest and deciding other personal, vital questions.
The main objective of the project is to give support to parents who bring disabled children up and to help their children in social rehabilitation, to give them to understand that our society, our state are not indifferent to them.
I came through heartrending experience. I had a son who by inadvertence and negligence of doctors had got a birth injury of cervical spine. This severe injury made him physically challenged and caused his death after 5 years of torments. During 6 years I struggled with serious ailment - sickness of my son. I was offered to just give up my son, that is, leave him in the baby house. I’ve been waiting for him for 10 years. Even after learning that my son is seriously ill, I did not give up, however hard it was for me. My kid died two weeks shy of his sixth birthday and a month shy of the next operation. We buried our 5-year-old son on June 30. On July 6 he would be 6 years old.
As a mother who lost her child, who passed all the difficulties on her way, I decided to help all the other parents who are still going through hard times, caring for a sick child. I and my deceased son saw such boarding houses in Russia, Israel, Thailand, South Korea, and I would very much like to see the first boarding house for physically disabled children appear in our country. After all, at present no person is secure from the illness of his or her beloved child.
I just want to describe one day from my life spent with a disabled child.
What a grief for the parents, for the brothers and sisters of sick children ... this is hell. This is the end of a full life, this is a closed impasse, from which there will be no way out.
This is when every day is replaced by another day, nothing good will happen, but only tears, anguish and despair. This is sleepless nights when you do not sleep at all, and if by a miracle your son falls asleep for one hour, then you do not want to sleep yourself.
How painful and tearful it is to see this only in reality, looking from the windows of the apartment, where real life reigns. Children play snowballs, chute and sledge, mothers walk the streets carelessly, buying sweets for their children,
pay a visit and go to business or just breathe fresh air, while my son and I have not been out on the street for more than 5 years (for the simple reason that we just get sick with a viral infection and get into emergency room because of the lack of immunity) and do not know that there is a different world, there, behind the walls of the apartment where misfortune has settled and the space is sadly saddened by sadness, despair, pain in the soul and in the heart and an eternal impasse. Where there is absolutely no way out of this impasse. The heart is bursting with pain and sorrow, from the fact that by somebody’s negligence the entire family suffers, which practically no longer exists. There are no warm relations in the family that exist in other families, no one come to visit us, we do not celebrate our days of birth, we do not meet the New Year, and there is no joy in every coming day. For you the time has stopped ... No matter what day of the week and what date it is today.
You are indifferent to everything and you already do not need anything. Every second you are worried only about your son and about helping him to get on to his feet, but how? How to look calmly at everything that happens? When there is no life either for the eldest son, who is only 14 years old and who dreamed of attending hobby groups since childhood and going in for sports, only he has to sit around the clock with a sick brother from 8 years of age, constantly missing classes, simply because the services of a nanny for such children are very expensive.
When I’m no longer able to sit with my son during the day, I just close the door in the room and go to sleep on last legs, I have nothing to do with it, I do not need to cook dinner, feed my family, because this was another sleepless night. I do not care. I just cannot describe it in words; I DO NOT PREPARE LUNCH, DINNER not because of laziness, but simply because of extreme fatigue.
I do not like arrival of the night, since I have nothing left but to cry, cry and cry. Every night, when all people fall asleep, I and my son spend the whole night crying with pain and despair. A newly born child suffers from the illness, completely innocent child who ruthlessly suffered from the hands of “doctors” who were taking delivery, and the mother who endured such an unbearable ordeal suffers too.
Having fallen asleep at 10 am, I wake up in the evening, but I am not in rested state, but in a stuporous state, because night sleep is important and irreplaceable, and nothing can be compared with it. It is sleep that helps to restore physical strength, restore lucidity of mind, improve memory and attention. The organism is restored with correct regime and daily routine. The night that was 140 days ago and 3 years ago, and it will be both tomorrow and in six months - it is one and looks like all nights, where the scenario is the same – the night, tears, despair, vacuousness and always one thought – when will a gleam of hope be and my son will be able to take a spoon in hand himself, turn over from side to side on his own at night, when will not he cry at night from pain (reacting to weather, muscle pains and painful spasms), and finally when
will he tell me the word most long-awaited over 6 years - “MUMMY”, for which I am ready to give my whole life.
And exhausted by such an ordeal - you can just relax and get some treatment.
How it hurts to write ... and I will be understood only by that person who has gone my way or was in the situation similar to our case.
In my turn, I searched throughout Kazakhstan for such institutions where it would be possible to temporarily leave the child for a day stay or for several days, when I myself wanted to raise money for surgical treatment (to go to all enterprises in the cities of Kazakhstan). But, alas, there are no such institutions in our country. There are baby houses, my son was not accepted there (temporarily), it is necessary to write a denial letter, and one does not want to talk about conditions of psychoneurological dispensaries – it is very difficult, there are mostly mentally retarded and denied children there. Their conditions are the same – they do not bear responsibility and official child abandonment is necessary. Kindergartens for physically disabled children also accept children who are walking and who know how to service themselves, who ask to have a dump. And after all my son is lying-down, and does not serve himself absolutely and there are violations of functions of pelvic organs by the type of uroclepsia.
There are a lot of children like my Alemzhan. Those who do not go and cannot serve themselves, and all the more attend schools.
I decided to devote myself to such children and mothers - to help them, to open a boarding house. They will be able to leave children here both for short periods and long-term period (for example, if parents work on a rotational basis, lie in the hospitals themselves, go to sanatorium treatment, or rest with other members of the family, depending on the circumstances) or only for a day stay (as a kindergarten).
Children will live in this boarding house like at home, and if among them there are children who cannot attend an educational school, respectively, they will be provided with social rehabilitation, that is, human interaction, learning the world, entertainment events.
They are the same people as us, but they have a different world, their own - pure and unselfish. It is not their fault, that they are not like all children, and they are special and they need to pay hundred times more attention, give them caress and care. They are children from the Sun, they are our Angels.
My goal is also to help parents. Let them salvage their marriage – do not get divorced, let moms give birth to healthy children, go to work, devote themselves to other healthy children and all this life problem. After all, life does not stand still – it continues. And my goal is to help parents and sick children. Of course, parents cannot be replaced. I really hope to create home conditions in the boarding house so that children do not need anything, grow
and develop, and their parents with my great support go further and achieve great success in life!
The beginning is already there.
In 2015 I officially registered LLP “Nur-Alemi-2010” in Akmola people service center in order to obtain a land plot for construction.
Akim of the Akmola region Kulagin S.V. allocated a land plot with area of 1 hectare.
Further, at the end of 2016 I officially registered the Social fund “Alemzhan Zholy” (“The way of Alemzhan”) in the department of justice of the Akmola region in order to raise funds for construction of the Children’s boarding house (I enclose all the documents).
It hurts me for cold-blooded attitude to my project. I cry, I feel utterly discouraged, but it is so INFERNALLY HARD to give up and stand to lose, go alone against ALL. For the sake of my deceased son and all sick children, I will achieve my goal. After all, God gave me such an unearthly ordeal not without reason. So He sees that I’m strong and I will cope with everything, no matter what.
After opening the fund, I appealed to all patrons of art and all large enterprises of Kazakhstan for getting help in raising money for construction of the Children’s boarding house. All of them have REFUSED.
Oligarchs, patrons and big businessmen also refused to help me referring to the fact that they sponsor various sports competitions (football, hockey), beauty contests and other more important projects. In turn, they build commercial facilities for themselves, from which they can make profit and take pecuniary advantage: trading hypermarkets, hotels, restaurants, entertainment clubs, service stations and etc.
This is just a small amount of real facts related to our mentality. It is so customary for us to live, though we are from the country of the “third world”, where there is no concept of MERCY, COMPASSION, HELPING CHILDREN WITH LIMITED OPPORTUNITIES
The total number of children with disabilities in Kazakhstan is more than 65 000. Unfortunately, the number of sick children is growing. This is influenced by ecology of our region, genetic factors, complications of various diseases, improper treatment or as in my case – medical negligence.
Amount of 650 120 000 tenge (six hundred fifty million one hundred twenty thousand tenge) or 1 706 665.27 USD (at the rate as of september 12, 2018; 1 KZT= 0,0026USD) is necessary for realization of this project.
For my part, I am ready to fully inform You and the public (through mass media, through website of the Fund, as well as in social networks) about all expenditures of the received funds, up to sales receipts (scanned variants of originals).
If I had a big financial opportunity, I would have built a Children’s boarding house on my own resources, without involving sponsors and the public.
For my part, I have contributed money in amount of 17 million tenge (54078 USD) paid to my son as compensation of material damage for 6 years of ordeals, but, unfortunately this amount of cash assets was insufficient even for the next stage of surgical treatment and as a result, my son deceased because of the consequences of his birth injury. Though it is a small amount of money, I contributed it with all my heart to a good cause.
Considering the great social importance of this project, I ask You to support me and provide, if possible, the maximum assistance in financing a unique project for the benefit of all children with disabilities in the Republic of Kazakhstan.
I hope for further cooperation and understanding on Your part.
Sincerely yours, Director of public Fund "Alemzhan Zholy" Issenova Kuralay
В рамках данного проекта планируется построить «Пансионат для проживания и временного пребывания детей с ограниченными возможностями». Площадь строительства составит более 3500 квадратных метров.Территория будет полностью благоустроена и ограждена. Будут подведены все необходимые коммуникационные инфраструктуры. Все комнаты будут оснащены необходимой для проживания детей мебелью и инвентарем. Детям будут предоставлены личные вещи и шкафчики (одежда, предметы личной гигиены и пр.). Также в пансионате будет пятиразовое питание, в том числе диетическое.
- Получение всех необходимых документов;
- Получение земельного участка под строительство;
- Прохождение всех комиссии и экспертиз;
- Составление ПСД;
- Поиск подходящих контрагентов;
- Строительство и ввод в эксплуатацию здания пансионата;
- Решение проблем с транспортом;
- Набор и обучение персонала;
- Поиск спонсоров.
Основной целью проекта является помощь родителям и их детям-инвалидам в социальной реабилитации. Дать им понять, что они не безразличны для общества, для государства! Цель - строительство пансионата для детей с ограниченными возможностями. Использование всех необходимых ресурсов, связей, поддержки со стороны государства и частных лиц.