What is CHD? CHD stands for Congenital Heart Defect. As defined on the Children's Heart Foundation page, "A CHD means a child is born with an abnormally structured heart and/or large vessels. Such hearts may have incomplete or missing parts, may be put together the wrong way, may have holes between chamber partitions or may have narrow or leaky valves or narrow vessels."
So basically... it is a heart condition you are born with. 1 in110 kids are born with a CHD!
Our precious Stephen was born with a very serious and complex CHD (many of them actually!)
So Why Bring Awareness?
See this face? This precious boy...I love him more than I can describe to you in words. He has a special disposition about him. We have always said that God gave him an "extra dose of joy!" He smiles constantly, has a laugh that will melt your heart and gives the best squeeze hugs! He also lives with only half a heart. Yes...that's right...a half a heart.
You see Stephen was born with a complex heart condition that currently has NO CURE (I'll dig a little deeper into his specific condition in other post). His "options" are limited. Right now there is a 3 stage pallaltive surgery available (2 of which he has had...the 3rd inevitably occurring this summer).
palliative
: reducing the severity of a disease or condition without curing it
: something that is intended to make a bad situation seem better but that does not really improve the situation
: something that is intended to make a bad situation seem better but that does not really improve the situation
As one cardiologist put it "you have 2 suboptimal options at best." That friends...that is our reality. That is Stephen's reality. Sure, he LOOKS fine. Yes, he LOVES life. No, he has NO CLUE (nor do his siblings) on the ACTUAL REALITY of his condition. Honestly, I am pretty sure 90% of our friends/family don't fully understand just how SEVERE it really is. If I had to take a guess at why I would say most probably don't take the time to process it. To let the actual reality sink in. It's too hard to. It's much easier to look at this precious boy and forget the reality (a coping mechanism I use OFTEN). But it is a reality we are faced with DAILY. I am daily reminded of his condition every time I kiss his sweet blue lips or hold his tiny purple fingers.
So why awareness? Because Stephen needs a better option, his heart friends need a better option. Everyone usually asks "why isn't he on the transplant list?" Friends, transplants are only palliative too...they don't last forever.
What can awareness do? It starts with awareness. With people seeing a need. This face...it's in need.
Awareness brings funding, funding brings research, and God willing research will one day bring a cure for this special boy.
Let's Start with Awareness. This Friday is National Wear Red day and we would love for you to join us in wearing Red for Stephen and all of his heart hero buddies! Snap a picture and share it on social media using #CHDawareness #redforstephen
And maybe consider going a step further and by making a $10 donation to The Children's Heart Foundation in honor of our Heart Hero!We started a fundraising campaign on FB that can be accessed here.FB Children's Heart Foundation FundraiserAdd #idonated4stephen and #childrensheartfoundation to your photos! You can also donate directly to their website Children's Heart Foundation Together we CAN make a DIFFERENCE!
