Sunday, September 28, 2014

Charlee's Law

Tonight I had a great experience! I had the honor of accepting an award on the behalf of Adobe Systems Incorporated. It was a great honor to represent such a great company in front of such great people who do so much for the community and society as a whole. Tonight was the Community Service Awards for the Epilepsy Association of Utah. Adobe was awarded the President's Award for its donations and support.

Even aside from actually accepting the award, just being there was a great experience. I was touched to see the great work of various people in researching, treating and raising awareness of Epilepsy. I learned a lot about both the organization and disease, both of which I didn't know a while lot about. It's always amazing to me to see the dedication and passion people have for helping and serving others.

Regardless of where you stand on the Medicinal Cannibis issue, one can't help but be touched by the story of Charlee Nelson, the namesake for HB 105, now known as "Charlee's Law." This bill was brought before the Utah State Senate, where is was amended and approved unanimously the very same day! It was amazing to watch this bill. It is rare to even see see a bill get voted on the same day, let alone, passed. And Utah is one of the first states to do so. It was a proud day in Utah back in March, when it was signed into law by Governor Gary Herbert, to go into affect July 1st. Charlee was there at the state Capitol when this was signed into law and passed away just 2 days later at the age of 6.

It might be a tad cliché to say this, but there wasn't a dry eye in the room when pictures of Charlee played to a song written for her. I felt like I must've had the wettest eyes of them all. As I saw all the photos of Charlee, smiling and happy, then then to see her slowly losing all cognitive ability, I couldn't keep from crying and am not too proud to admit it. I thought about our little Lexi and how that could just have easily been her. Epilepsy is now estimated to affect 1 in 3. What an astounding number! I can't imagine what her parents went through and have no idea how I'd ever be able to handle that. As I sat there in my tux, tears running down my face, I wanted to do nothing more than pick up Lexi and cuddle her and hold her tight and never let go. I told myself I was done with school and done with long work days so I can spend every spare second with my baby girl.

At the end of the video, there was a quote,  I don't remember who from, but I'll never forget what it read: "If I could save you, you'd live forever." I always heard that becoming a parent changes you. It truly does...

I encourage everyone to learn more about HB 105 and Epilepsy. http://www.epilepsyut.org

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