Update: 7/13 @ 2:37PM: I just received a call from the Doctor letting us know that our son is at NO RISK for the disease. Needless to say my family is extremely happy. This past week has been the worst week of my life. Now I can start to enjoy my newborn son once again. I appreciate all the comments that were left on this post. It’s nice to know that there are people out there who truly care. Thanks again!
Because of this nightmare, I’ve decided to donate all of my July Google Adsense revenue to the Hunter’s Hope foundation for research into this horrible disease. Thanks again and stay tuned for some actual TiVo content on this site. I plan to get back into things in the next couple of days once my emotions calm down.
In case you haven’t noticed, things have been a little show on this site as of late. Last week my wife and I received a call from a local neurologist letting us know that our newborn son did not pass the New York State newborn screen. The neurologist told us that our son tested positive for a rare disease known as Krabbe. Needless to say things have been rather hectic. This past Tuesday, my wife and I brought our son to see a geneticist. Now we’re waiting on some additional testing to determine whether or not my son has the full blown disease or if he is considered a “low to moderate” risk.
Needless to say, I haven’t had any time or desire to report on TiVo. Within a week my entire life has been turned upside down. Everything that use to be important to me is no longer important. Hopefully when we get the test results back we will find out that he is considered low to moderate and the only thing we will be able to do is monitor him from this point forward.
Stay tuned to this site for any updates. I may get somebody to fill in for me but, for now I’m just trying to deal with everything that is going on at home. My hopes are high but if my son does in fact have the full blown disease I’m not sure how I am going to handle it…..
Our prayers are with you and your family.
I’m terribly sorry to hear this, Alex. I’ll be thinking about you guys.
Our thoughts and prayers are with your son and family.
Such difficult news.
Your son is absolutely beautiful — I’ll be thinking good thoughts for your son and family.
My thoughts and prayers are with you.
Take care of yourself and your family… there is nothing more important.
My thoughts are with you.
Will be praying. I’m glad you have your priorities in order.
I am so sorry to hear about this. I’ll be thinking good thoughts for you and your family.
Damn, I’m very sorry to hear this Alex. I hope it turns out to be an error in the screening, or at least is in the low-risk group.
Hang in there Alex! We’ll be thinking good thoughts for you!
Alex, I’m so sorry to hear your family is facing this. I wish Nicholas the best of health, and good luck to all of you as you go through this tough time. – Mark
This sucks. As a parent of two kids, I know that I would gladly take on any and all of their problems. I’m so sorry to hear this news. My prayers are with you, man.
augh, I don’t know what to say dude. I’m very sorry to hear that. – I wish you and your family the best of luck.
Very sorry to hear that. Take care of your family. I wish you the best.
I’m so sorry to hear about this Al. Hang in there and hopefully things will get better.