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…..
Praying for the best for your family Alex.
Thanks for taking the time to explain, you’ve got your priorities straight. I’ll be praying for you.
Alex, I’m sorry to hear the news and all of us here at TiVo are hoping for the best for you and your family.
Don’t worry about the site. All the best.
Boy, I said a little prayer after I read your story and came back on a whim and saw the latest news. How great is that??
I’m very happy for you and your family. As a parent of a 9-month-old little girl I empathized with you big time.
Alex,
I’m relieved to hear things worked out for the better. When I read this last night (and your links), I felt such empathy for you and your family.
Thank the gods! I know that’s every new parents nightmare. Take the time you need to recover, emotional trauma has it’s tolls too.
Wow, I’m so glad everything worked out. Makes you prioritize your life. We went through a scare as well at the birth of my child. I know your fears.
Wow, sorry to hear, I’m sure everything will turn out ok.
Glad I checked back and saw the update – GREAT news! That must’ve been one hell of a roller-coaster ride, emotionally. I’ve had some scares with my parents over the past few years – dad had a heart attack, cancer scare with my mom – but I’m sure that doesn’t compare to such a scare with a newborn.
I’m glad it was just a scare and not more serious.
So thankful your son is in the clear. Your blog popped up with a google alert I have as my son does have Krabbe. Hunter’s Hope is a fantastic organization, thanks for donating there.
Thanks for stopping by Phil. The least I can do is donate to Hunter’s Hope. I wish your family the best of luck.
Alex,
Your donation of your July Adsense to Hunters Hope is a reflection on what a good person you are.
I cannot tell you how happy we are to hear the great news.
This update is wonderful news! Bless your heart for donating to Hunter’s Hope.
No risk, Great news! Congrats, I can only imagine the relief. What happen?? False positive?
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