Tuesday, February 3, 2015

Our curse..... Ondine's curse.... it's my curse too....

Some of my customers know that I am a special needs mom but I think a lot of parents out there don't know what my son has.  Basically, my son has CCHS.... Congenital Central Hypo Ventilation Syndrome.  Basically, Laynson will eventually stop breathing when he falls asleep.  It's also call the Ondine's Curse.

I have also heard that they mentioned that some of the SIDS babies that has tested for this genes shows positive but because they are mild, the doctor's didn't catch it and they went home and eventually build up a lot of CO2 causing them to pass away.  A lot of them were said to have SIDS.

Luckily for us, I guess I still consider myself lucky because the doctor caught it 30 mins after birth. We were also very lucky that we live in Dallas, TX and not in smaller cities as some of our friends were told to let go of their baby and was given a year to live at most.

Anyway, there is a conference once in 2 years for CCHS and too bad, we were not there at 2014 CCHS conference, so, we didn't get to watch "Our Curse".  Not that I am not watching my own daily but yes, heard many raving reviews about this short documentary.  And YES, it was nominated for the 2015 Oscar Short Documentary, I hope they will win, it will increase the visibility of CCHS and please, please find a cure someday.


God is great!  Can you believe that he knows that I am in this little small town in Greensboro, NC and he decided to entertain my travel for work by having Geeksboro Coffeehouse Cinema to show it?

I can't wait to watch it and will be bringing lots of tissue paper!!! Yay!!! Finally get to watch it!  I can't believe it has been almost 3 years where this nightmare begin.  These 3 years has been a rollercoaster ride for us, we have almost lost him.  It is scary but like my little fighter, I will fight for everything for him. 

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