Zandyr "The Sandman" Miller

There is one member of our family I haven't mentioned yet. That's my 8 week old son.  Born at the end of September of this year, he had unusual low birth weight(6lbs 14 oz) and 19 3/4" long at full term, for us that was unusual because the first 2 kids were over 8 lbs and 37 weeks.  Not really thinking anything of it we were happy to have our son in our lives. He didn't show any signs of being premature in any way.  3 days past, we were released from the hospital to go home.  Only having a few days left until going back to work, I spent time with my newborn son, helping my wife because she was down from a C sectional birth. The week past and I returned to work, only to receive a call from my wife in hysterics, that something was wrong with our son. The Doctor had called and gave her results from a blood test that is giving to every newborn right after they are born(PKU). The test indicated he had been born with a disorder called Glutaric Acidemia type 1.

Glutaric Acidemia type 1 is a deficiency of the enzymes that break down certain fats and protiens in the body to give us energy.  So I called the doctor myself, wanting to know more, like, is it treatable, is it contagious, is it hereditary.  They told me that if untreated it could cause brain damage, organ and heart  problems, breaking down of the muscles and eventually death.  My heart dropped out of my body and my soul was torn into all different directions. How was this possible, it couldn't happen to us, he's perfect.  The doctor also told me on how he had produce or was even born with this disorder.  See it isn't contagious or hereditary,  it seems people in general have a mutated gene in the big DNA pool. The catch is, it has to be the same mutated gene in 2 different people, and when combined, well this is the out come. The chances of my wife and I having the same mutated gene is about 1 in 62,000.
The treatment for individuals with this disorder is not the same as the others. Each person is treated differently, even though they have the same disorder.  Glutaric Acidemia type 1 is a long life treatment. My son eats all the time, most newborns go 3 hrs in between each feeding, my son goes 45 mins to a hour and each time its a full serving.  I have read up on this disorder, It isn't fair from a parents view to see their child suffer, in anyway.  But its something I will have to live with as time goes on, he wont be any different from any other child, he will be able to grow up normal and have a normal life, and one day , have kids of his own. I encourage those who read this, to do a little research on Glutraic Acidemia, its a real and scary disorder. To those who have had experience or even know someone with this disorder, please any info would be helpful, We would love to hear your stories and experiences .
Thanks again for your time on our site, come back soon
peace, love , and god bless those who fight for our every day freedoms over seas, Mine and my families prayers are with all the troops


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