Posted by Constance Parten, Nightly News Web producer (10:48 am ET, 03/10/07)

Editor's Note: This post is from Mary Dudley, president and founder of Diema’s Dream, a charity devoted to changing the lives of disabled children in Russia.  Mary's story, and that of the children she helps, will be the subject of one of our broadcast stories Sunday night. Here, Mary talks about the cause, the children, and how the give so much joy back when given just a little care and attention.  "They are like a flower that suddenly blooms and the lingering scent lodges in your heart forever!"

When I first met Diema, it was hard to look away from those big brown eyes that were so desparately seeking attention.  He was three years old, paralyzed from the waist down with an oversized head.  He suffered from Hydrocephalus and Spina Bifida.  He was in an oversized wooden playpen with not one toy.  He was still bottle fed and his baby teeth were rotten.  He didn’t speak, partly because of never having been fed solid food which would help develop his facial muscles.

Diema with his headphones on     

 

Children, who have the misfortune of being born with disabilities in Russia, are for the most part abandoned at birth by their parents.  A holdover from Soviet times, parents are strongly encouraged to give their child up to the state.  These children are hidden away in closed institutions where care is at best minimal.  They are forgotten by their parents and ignored by the state.  For families who make the brave decision to keep their disabled child, there is little in the way of state support and they are shunned by society.  The assumption is that the parents have led a depraved lifestyle which is the cause of their child’s disabilities. 

Diema and I developed a very special relationship.  We convinced the orphanage to start feeding him solid food which was not as easy as just handing him a bottle filled with soup.  Diema loved to play and we developed a special game using a ball.  Before long he spoke his first word ”miatch” or ball in Russian.

At the age of five, Diema was transferred from the Baby Home, where our women’s group volunteered.  He was sent to an institution with over 600 children, adult disabled and elderly people.  Institutions like these are closed to outside visitors.  The conditions there are unthinkable.   I was devastated to think of what I had done.  I had given a child love and attention, special play times and walks outside and it was all taken away from him.  He was in a room of 30 disabled children and there was only one worker caring for them.  The children were often tied to their bed, their only stimulation -- the food they were fed, which wasn’t even enough to keep them from wasting away.

This all occurred in the early '90s in Moscow, Russia.  Much has changed and continues to change in Russia.  The oil economy is allowing Russia to catch up with the rest of the world.  However, the government’s focus and society’s attitude toward these children is not changing. Yet.

That is what Diema’s Dream is trying to do.  It is an orphanage program working with families and their children to build a village for young disabled adults.  There is so much more we would like to do.  We would like to bring professionals from the U.S. who can share their knowledge and experience in working with disabled children.  As these children never existed in society here, there are virtually no programs in Russia to teach people how to work with severely disabled children.  There is also a severe lack of medical knowledge.

We would like to do more in building parent advocacy.  We would like to have a government program promoting changes in the state’s approach to these children.  We would lobby the government that keeping these children in their families and supporting the needs of those families is far better for the children and less expensive than a vast orphanage system.  We would like to provide more medical intervention and treatment.  Many children with very treatable conditions never receive treatment for their disabilities.

It is hard to put into words how wonderful Jim Maceda and the crew from NBC were when they were filming at the orphanage and our family center.  They were genuinely interested and touched by the children.  For correspondents who have covered the globe, it was so very wonderful to see that they cared.  It touched me deeply and I know made a lasting impression on the staff working with the children.  Thank you NBC for caring about the world and through your work Making a Difference!