This is my son Seth. He is 9, the second oldest. He was born with PKU (abbreviations for a REALLY big disorder). He is unable to process certain proteins. If those protein were allowed to build up, they would eat at the grey matter in his brain. He would be totally mentally retarded by the time he was 3. But he's not. He is a healthy, intelligent boy. PKU is screened for at birth. He was diagnosed at 11 days old and treated. To this day he is totally unaffected. Today I had to tell him that we were going to lose his baby brother. I had to tell him that if Grey had been screened for Krabbes Disease he could have been treated and healthy. I had to tell him that people before him had to die so that he could be tested for PKU. He asked me why his disorder was more important than his brothers, important enough to be tested. I don't know Son. I just don't know.
I can't help but feel that this whole thing is bigger than me, that I'm supposed to do something with the loss of my baby. Really, what are the chances that my husband and I are both recessive carriers for two totally unrelated disorders? Why was one of our sons spared through newborn screening while the other was ignored? I don't know. I just don't know.
I feel like we're the poster family for flawed genetics. But if you knew us, you'd know we're not a flawed family. I feel like God has chosen us, a Special Ed. teacher and a nurse, along with our sons, to make a difference. Together, as a family, I feel like we were chosen to bring awareness, to make sure that no one disorder is any less important than the other.
I wonder how Seth will make it through this. How will he not feel guilty about being tested when his brother was not? I don't know. I just don't know.