Goodbye Forever 2014

Goodbye forever 2014. You will go down in history as the most stressful year of my life.

This past January, one day before I was supposed to leaving for Cancun on a business trip you threw me my first wrench. Hunter had his first hospital stay which they told me "would never happen again." I cry thinking about how gravely different this January or any of Hunters 12 months could have been that he went undiagnosed.

We lived blissfully unaware of his disease for another 6 months until it happened again. Every thing was the same, I was living the same nightmare all over. Luckily for us the doctors at University of Maryland knew there was an underlying issue they needed to find.  After consulting a ton of doctors, the geneticist ordered the test that would give us our answers.

We were discharges from the hospital with the diagnosis of Fatty Acid Oxidation Disorder. That was enough information to read horror stories online and prepare us for the worst and drive us crazy with the unknown till they called 5 days later and said LCHAD. I had done my research and knew what that meant (or I thought I knew what that meant) I had read some worse case scenarios online.

Over the next couple of weeks working with the geneticist and nutritionist I realized this wasn't a worse case scenario LCHAD.

Hallelujah!

I had hit rock bottom of emotions, I had cried every time I was by myself for weeks, I had lost sight of what the future looked like but talking about Hunter's LCHAD gave me comfort and his future... our future was looking up.

Then Alexis got her diagnosis... what can I say, I had a handle on the disease but I NEVER expected she would have it.

We spent the rest of the year seeing specialists making sure they weren't having any complications from being undiagnosed for so long. I'm happy to say everything checks out perfect!

We are lucky and we are the minority of LCHAD'ers who survived undiagnosed and for that I am forever grateful.

This has changed our lives forever but I will not let this disease win.  We appreciate our friends, family and followers that are helping us educate and raise awareness.  We will continue sharing our story in hopes more people learn about LCHAD and we hope those with a new diagnosis of LCHAD find comfort in our story.

You may not be able to see the fight within their bodies but it is there and never going away.