Parents' Letter (March 5, 2012)
My wonderful baby was born on November 21, 2000. Two months later she was diagnosed with phenylketonuria. It is a serious genetic disorder that requires keeping to a strict diet. 98% of food eaten by healthy people must be excluded from such child's dietary intake. Instead of regular food kids suffering from PKU should eat costly low-protein products, which are neither produced nor sold in our country. They can be only bought abroad.
In case the diet is broken, the child's brain gets affected which leads to the development of severe mental retardation. She becomes disabled. The child grows unable to master school curriculum, loses aquired skills (even the ability to take care of herself). I would like to emphasize that if the diet is kept, the child grows normally. Such kids get higher education, work, marry and have healthy children!
When Lisa turned 1 my husband left me. I stayed alone with a disabled child on my hands. Lisa's father has never given any money to help me. He is deprived of parental rights and does not pay any child support.
My girl is 11 now. She goes to a special school for children with speech disorders. Inspite of the disease she is a happy girl. Lisa is very easygoing and cheerful. She likes small children very much.
I am a nursery school teacher. I used to buy special products for Lisa abroad. But now it has become very difficult. For me each day is a trial. I spend my life thinking about what my child will eat. And I have almost nothing to give her. I know what it means to have a starving child. Because of malnourishment Lisa easily gets tired, she feels exausted, grows agressive and unruly. Very often such kids develop seizures.
I am worried about my daughter. She is my only child.
I hope for your help. I believe that my child will be able to get education, work and have a family.
Natalia and Lisa
March 26, 2012