"Charlee's Law" - We Love You Charlee

Charlee - See I bet you are already in LOVE with this cutie pie <3

To Start off this post I would like to wish Charlee a Very Happy 8th Birthday (last week). This little Angel captured my heart and I thank her everyday that she did. I feel that I was suppose to meet Charlee and her amazing family. They were meant to be in our lives. I also believe that Emma knows Charlee and they spent time together in heaven, there is not a day that goes by that I don't think of Charlee and her family. Charlee sadly passed away in March of 2014, but she left us with so much joy and hope. If you would like to learn more about Charlee and Battens Disease you can read more on her blog and/or facebook page. I promise you will fall in love with her just like we did.
Here is her Facebook page: https://www.facebook.com/charleesangelsbenefit/info?tab=page_info and here is her website: http://charleesangelsbenefit.blogspot.com/

Everyday that passes we never know if Emma will have a seizure (or how many she will have) and sadly this was the same for Charlee. We have tried loads of medications and none of them have seemed to work. They would make Emma so tired and she would sleep all day, seizures kept happening and she stopped eating. We were so scared about what to do next we had tried so many medications and she was still having seizures and she wasn't "there". She was just present with little function because she was so tired and the seizures were wiping her out! Finally it hit me CHARLEE!!! Charlee and her family fought to get Cannabis oil legalized here in Utah for people with Intractable Epilepsy. However, it's not as easy as it sounds. There is a process you have to go through in order to be considered for a Hemp Card here in Utah. Our first step to qualify was Emma had to have 3 different failed seizure meds, sadly and thankfully Emma had this requirement before she was 7 months old. Second we had to get paper work filled out and approved by her neurologist to have the proof that Emma has intractable epilepsy and 3 fail seizure meds. After this we had to take the paper work filled out by the Dr and ourselves and deliver it to the State Department of Health. We had to pay $200 for our Hemp Card. This card is only good for one year and then we have to renew it for $50 every year after that (unless you miss the deadline then its full price again). The downside is all of this is an out of pocket expense including the purchasing the CBD oil, we also have to guide ourselves through the use of the oil because legally our Dr can not help us with dosing thank goodness for the Realm of Caring and CW Hemp. Yes, it is costly but so so worth it. We worked hard along side Emma's neurologist and she is fully approved to use CBD oil YAY!!! 

In previous posts I have been very vague about Emma's meds just stating that we were trying a new one this was because I didn't want to jinx anything before we got our own results from the oil. I am proud to say that Emma is on CBD Oil and it is doing wonders for her. Her seizures are under control and her progress overall has improved so much. We have got to see her smile, hear her laugh, and most importantly we have been able to see who Emma is and we love her personality so much! I hated to see her so drugged up on meds. Everyday that I give Emma the CBD Oil I think about and thank Charlee and her family for fighting so that so many families get to see and feel the benefits of CBD oil.

Emma's Family with Charlee's Amazing family

Emma with Charlee's Parents - Catrina and Jeff Nelson

Results of "Charlee's Law"

Read more about Charlee's Law:

http://charleesangelsbenefit.blogspot.com/2014/03/cannabis-bill-signed-into-law.html

THANK YOU CHARLEE AND FAMILY WE LOVE YOU ALL SO MUCH!!!

Fly High and Dance with the Angels Princess. We will always be one of Charlee's Angels and yet she is ours!

*Update on Emma: She is currently fighting double ear infections and RSV :(. We are hoping to stay out of the hospital. Follow on her Facebook page for more immediate updates sometimes it his hard to blog, facebook is faster and easier.

https://www.facebook.com/Embracelifeemma/