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 Marina A. Bialik PhD
Why I take part in this project.
At least twice in my life I was in the situation when I realized the necessity of doing something and did not have the slightest idea of of what to do and how I could help to solve the problem, that was so important for me.
I was able to find the solution having studied the experience of other countries.
Everything started when in !988 I saw a program “Donahue and children” by Pozner. I believe many people remember it. I was impressed by the possibility of existence of system of real help and emotional support for seriously ill and even dieing children. I realized it was exactly what I was looking for but did not know if it was possible.
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The program was about The Center for Attitudinal Healing in California and Carolina Smith,
- the leader of children program The
Center for Attitudinal Healing (now Corstone Center) turned out to be a wonderful person, who organized training for volunteers, who were willing to work with children suffering from cancer.
We started creating system of social and psychological support for children suffering from cancer. We worked with children of outpatients department of the Institute of oncology ( the head of the department Moiseenko)
The most important part of our work was support of those children who did not not respond to the treatment and were discharged under the supervision of their local pediatricians, who were incompetent in issues of palliative care. That’s why I started thinking about hospis for children.
By then Victor Zorza had already visited Russia and helped to organize first hospices. But those hospices did not work with children. It was obvious that we had to do everything ourselves. At a time I did not know where to begin from and how to make the system work. ь.
And again I studied experience that existed abroad
I was lucky to personally study the work of Edmark Hospice for Children, Norfolk , Virginia, USA. This is a program of home support for children with life threatening conditions and their families.
Of course in 1993 nobody could think of reproducing the same system in Moscow. The environment and expectations were too different. But it was important to see how the system could work and understand that it can really improve the quality of life of a child and his or her family.
Since then I started working with dieing children
This is exactly why I take part in the project. I am sure that in different parts of Russia there are people who are not indifferent to the fate of families with seriously ill children. Unfortunately very often they don’t know how to help such families. The aim of our project is to show the systems of such support in other countries and offer help to people willing to start this work. According to my own experience in order to decide what you can do, it is useful to know what can be done.
We are ready to help every person who has come to realize the importance of such difficult but wonderfully rewarding work.
Experience >>>
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