Phenylketonuria (PKU) Support Group

Phenylketonuria [PKU] is a human genetic disorder, in which the body lacks phenylalanine hydroxylase, the enzyme necessary to metabolize phenylalanine to tyrosine. Left untreated, the disorder can cause brain damage and progressive mental retardation as a result of the accumulation of phenylalanine and its breakdown products.

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Over the past year i have learned alot about PKU. My husband and i got together over a year ago, at the time he had a very young son and he told me he had PKU and that the baby's mom hasnt wanted anything to do with him since she found out when he was 2 weeks old. He worked all the time so his son, we call him Jr., stayed at grandma's. I fell in love with my husband and his son and very quickly i knew i wanted to marry him so i started learning about the pku knowing that he would be living with us. well we got married and very quickly became pregnant. We decided to let Jr. stay at his grandma's until the new baby was born and i got used to full time parenting. Now my son is born and we want to slowly make the transition of Jr. moving in with us. I know alot about how to take care of him but i guess what i really want to know is if i have friends here that could help me out along the way?

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I will help you!! Just send me questions! I know all about PKU because I am 16 and have PKU myself! I really take care of myself now ... cooking, blood tests, counting mg of phe etc and I would love to help you with any questions!!!

PKUgirl1994