Hi All.  Well we've done a bunch of research and know a bit more.  If you're someone that's in to this topic, our neuro said the best website is www.umdf.org.  It has "complex 1" disease listed specifically.  So the bottom line is - it doesn't really change anything for Cody.  He still battles catastrophic epilepsy and autism.  It's just that now we know why his brain doesn't work - a mitochondrial disease.  There's no cure, and only CoQ10 to help with electron transport.  So ultimately, Don and I both agree that nothing has changed for us for the most part.  We've always assumed Cody would be severly retarded for life - this is not new news.  The new news, I suppose, is that his organs could become compromised but there's no guarantee of that and the fact that he's doing well physically is a great sign.

As far as Casey goes, I think there's about a 25% chance that he's a "carrier" of the gene, but I think we can have him tested for it to know.  Even if you're a carrier, it doesn't mean your own children will be symptomatic.  For example, Don or I (or both) are carriers of the gene, but neither of us are symptomatic.  Our thoughts for Casey are somewhat worrisome, but I'm hoping they could be settled with a medical test.

As always, we know God's in control.  Personally, to know this is a DNA 'thing' is somewhat of a relief.  I've always harbored some fear that I "did something" during my pregnancy to cause Cody's illness despite 6 neurologists telling me otherwise.  It's a mom-thing.  Still, it does stink to know that Cody's poor little body has faulty "wiring." 

God keeps showing us the same thing - the same lesson:  "Give us this day, our dailiy bread."  In other words, we have what we need for today.  We won't borrow trouble from the future.  We won't dwell on the past.  We ask for enough grace and mercy to sustain us TODAY.  Give us our daily bread - our daily sustenance - for today.  We will worry about tomorrow, tomorrow.  Because today is Cody's 4th birthday and we plan to CELEBRATE him.  No diagnosis will get us down.  He is perfect and perfectly made - mitochondria and all! 

I don't mean to sound prechy - or overly spiritual.  For us, clinging to this truth is our very survival.  We are not in control of this life....God is.  It is a waste of our time and energy to fear and worry and try to control what is elusive.  So today we give thanks for Cody - that he's alive - and smiling - and ours.  And we leave his future where it belongs - in the hands of the One who made him just the way he is.

with love,

Shawna