Friday, July 16, 2010

I really need to stop ranting!

I know I've been a bit ranty lately, but please, allow me to rant one more time.
If you are a member of facebook, you have undoubtedly heard of the Chase Community Giving. If not, here's a rundown. Every person on FB has 20 votes they can use to vote for their favorite charities. Now, you can't use all 20 one one charity, you have to spread them out.
The top two hundred charities split a huge amount of money. I can't remember exactly how much it is, but it is enough per charity to make a difference.
So, the voting ended, and you could check out the winners.
What I saw really made me so mad.
Charity after charity related to animals. ANIMALS!!
Now, don't get me wrong, I like animals as much as the next person, but COME ON!!
You know what I didn't see?
I didn't see Saving Little Hearts, or any other CHD charity. I'm sure if any others signed up, but I know that SLH came in like 234 or something.
People...CHDs are REAL. They aren't something that is minor. They are major.
There were pediatric charities that won, which is wonderful. But CHDs will kill more children in one year than all childhood cancers combined.
Does anyone know that? Nope.
The awareness isn't out there. I cannot understand that. I'm sure it's hard for me because CHD is everywhere I look. I have many CHD friends, and it almost seems like the norm.
But here's a problem. Everyone knows about childhood cancer, it's visible. Everyone has seen the heart wrenching pictures of the child with no hair. Everyone has seen the St. Jude commercials. It's out there.
No one knows about CHD because, unless you see the children with their shirts off, you don't see it. There are no heart wrenching stories on TV. We have celebrities that do nothing, Shaun White, Brett Michaels, a Backstreet Boy, and I'm sure the list goes on. Why aren't they saying anything? They have the perfect platform to spread awareness. It makes me so upset to think about it. Because I'm just a person, I don't have the platform, but they are out there.
Then there was Boston Med. Those of us in the heart community were so excited. Finally, reality was going to be shown. And then. It wasn't. It was totally sugar coated. The baby was born with HLHS, which is serious. Many babies die from HLHS. But in the show, they just showed the baby going home like all would be fine.
And that's how many people think of CHD. That it gets fixed and everything is fine.
Only it's not.
These kids have to live with this for the rest of their lives. It is never fixed.
Yes, they can lead normal lives, sometime, but it will never be normal like a heart healthy child.
And the parents are never fine either. There is always worry in the back of our minds. When anything goes somewhat askew, we wonder. We wonder 'what if something is happening?' It never, EVER goes away.
And yet, we vote for animals. Animals.
And so, to show you the heart wrenching, I'm sharing what CHD is. The heart wrenching part of it.
It is this.



And it is funerals for babies or children who passed away far too young.
It isn't pretty. But it is very real.
There is hope, though. Back when Zachy was born, we were hard pressed to find anything regarding TAPVR on the Internet. Not so much, anymore. And through networking sites like Facebook, we are able to connect with so many more people, and spread the word.
CHD is real.


GinaBeana said...

I know I don't get it NEAR AS MUCH as you, but it makes me angry, too, that there is no awareness out there for the NUMBER ONE birth efect! Hello??? Number what...that's right...number ONE! Anyway, I'm proud of you for trying to bring more awareness for these little hearts!

Rylan & Dakota said...

You have educated me so much Bekki! I didn't know how many lives CHD took until recently. It is so scary! I am taking Dakota to the cardiologist soon to get "checked out." She had a PDA when was born and it was never followed to see if it closed. And Rylan has an ASD and PDA which will need surgery in the upcoming months. I am scared to death for my little angels!

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