I just turned 53 years old. I have been off-diet since the age of 5. I wasn't diagnosed until I was 4 years old and my youngest brother was screened and diagnosed with it. When they back-pedaled and tested me...well the rest was history.
When I was born in 1962, newborn screenings were not mandatory and rarely done at hospitals. My brother Mike was born in 1963, my brother Steve in 1965, and my youngest brother Tim in 1966-the first year that pretty much everyone was on board and doing the mandatory testing. When Tim was found to have it, they tested my other 2 brothers and myself. That's how my mom and dad found out not only that they had 2 kids instead of one with PKU, but that I would be mentally retarded by the time I was in grade-school.
They told my parents to prepare to have me institutionalized-for I would be far to great a burden for them to handle with 3 other children-one with treatable PKU-to take care of.
I'm very glad-to say the least-that they did not take the doctor's advice.