Friday, January 29, 2010


UPDATE: I just watched a webinar of the world famous surgeon (he really is.) that repaired Bentley's heart. Considering the below, I just had to add this quick note. I will post more about this later but as far as the importance of funding research for this cause... he mentioned right now they are working on building replacement hearts from stem cells. Now if that is not impressive then I don't know what is.

wow!! I didn't mean to make this so long. If you have time, please read all of it, it is an amazing thing!!!

I was completely SHOCKED yesterday when I checked Bryson's backpack...

There are always letters informing us of different organizations raising money for specific medical research. Seriously there are at least 3 a month if not more. Yes, I do support these 100%, medical research is extremely important. It is our future and most importantly our childrens future. Considering our heart surgery, all medical research hits close to home and we want to help every chance we get.

At the same time, Bryson has never and I mean NEVER brought home anything regarding children with heart conditions. This really breaks my heart. CHD is the #1 cause of birth defect related deaths and it is majorly under funded. Seriously... it is, so why is it not ever talked about? Why aren't there any organizations stepping up to our heart babies and their future. Well there are, just no one knows about them because it's not talked about. I hear of organizations raising money all the time for adult heart patients, but not our babies. It just really hurts. For example... Bentley might possibly have to have open heart surgery again one day... well, with further research by that time it is possible it will not be done by open heart surgery it could be less invasive. That is just an example... this goes for any heart baby. We need this research to find more treatments.

Ok, sorry.. I'm rambling. But yesterday, when I openned Bryson's folder and there was another organization raising money for research. I couldn't believe what I was reading... it was for "children with special hearts" Oh goodness!!! I broke down. I was thrilled. American Heart Association has put together this amazing thing called... "Jump Rope for Hearts" our children are learning at school about children with special hearts and how to take care of their hearts, and also how important it is to help others. Seriously, my excitment over this is just unreal. It's a great organization and they are doing great things!!!

Bryson and I are hitting this full force. He is so proud of his sister, and he understands how important this is. Bryson is really blind of the "truth"... of the real scare that heart babies and heart parents go through. We have always stayed strong (well I tried) in front of him, he did not see Bentley at her worst in the hospital, etc. So he doesn't really know the bad stuff. Bryson knows that his sister was born with a heart condition and she had to have open heart surgery and that saved her life. Therefore he realizes it is important and wants to help her future along with other heart babies. So he has made his promise to raise money for this organization and momma is helping him out!!!

Many of you might already know about this because your own children are doing it at their school (thank you!) but most of you probably do not know about this. It's really neat... basically there is a certain page on the American Heart Association website that we are sending friends and family to help us reach our goal. You make payment online with a credit card (it is a secure website) it is through the American Heart Association so it is real and you know exactly where your donation is going. We do not see any of that information. You only go to this specific American Heart Association page to donate to give Bryson credit for his efforts in helping.

I know there are hards times right now, believe me economy has hit our family as well. I am not asking you to donate, but if you do have just 10.00 to give... we would be so grateful along with every heart parent out there!!! This is super special to us and it's the first time anything like this has came through so Bryson and I are determined to do the best we can. Even though economy has not been good to us, we have decided to NOT eat out for dinner 1 night this month, we can definitely afford that. I just used that money saved for my donation. So I am not asking you to, I am strictly letting you know this information if you would like to donate and help Bryson reach his goal. When you make your donation you can also sign your name along with honoring a heart baby (or adult) you might know, you can put Bentley's name, or just leave it blank.

We are so thrilled about this. I'm not going to post the link here, but if you would like to donate just 5.00, 10.00, 15.00, anything at all please email me and I will send you to the American Heart Association page you need to go to so you can help. Again, we cannot thank you enough for your help!!!!! And I think it's safe to say that is also coming from EVERY heart parent out there!!!!

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