The parents dream of finding a cure, or a place for a child who was discovered to late and that child has already been brain damaged for life. If only one child is caught early enough by finding the information here before their doctor does then its all worth the effort to put it here for those desperate parents.
I am one of those parents who years ago had that need and it was so rare that doctors didn't find it until too late. If it was found when I first started seaching for an answer then my daughter Sonja (pictured right) could have been spared a lifetime of mental illness.
We wanted another child but waited for five years as we were told the chances were slim that We would have PKU CHILD again! Wrong !
Connie (pictured below) was born on Sonja's 5th birthday, JAN. 22, 1965 with not only PKU but with rubella syndrome from German measles that I had during first trimester of pregnancy which unfortunately caused blindness and hearing loss. The best part is that I had training from Sonja's PKU to know how to handle the diet. The disease only had treatment for three years when Sonja was diagnosed with very little knowledge of long term defects.
When either were in a hospital I was carried to their kitchen to prepare this special diet. I really went though some ordeals, such as stealing my baby from nursery shortly after she was born when I found out they wasn't feeding her because they couldn't find the prescription food they have to have and I said well I got a case at home and I know how! The sister at hospital allowed me in the nursery and that's how I got her and saved her life!
My research for ancestors began because I had an inquiring mind and wanted to know. I found that my great grand father had two handicapped kids which lived to ripe old age and when the daughters (blind) funeral was held a fire broke out during service and the church burnt to the ground.
The son was (retarded) died in 1965 in a home for retarded in Louisville, Ky. After the parents died he would run off looking for them, so they were forced to put him in special care. They story is that both was caused by measles but makes me wonder if PKU maybe in this picture?!?
My grandfather had three handicapped kids and two died the same week. His son had no use of his legs, perhaps polio but then again PKU affect all body functions. They said death was cause by a fever that both kids had. The last to die near six years old was a daughter with what they then called WATERHEAD.
Another family left a will to one son and I want to know why? Was he PKU? Was he blind? Did he marry? Perhaps DNA testing will soon have the answers.
Welcome to any parent or any one who has a desire to learn more about PKU, email me, as I have had double training.