Congenital Heart Disease

Congenital Heart Disease (CHD) : A type of malformation in one or more structures of the heart or blood vessels that occurs before birth

Congenital Heart Statistics:
1. It is the number one birth defect
2. 40,000 babies are born with this disease each year
3. 8-10 out of 1000 babies are born with CHD
4. It is the leading cause of defect-related deaths in children (Nearly twice as many kids die from CHD in the U.S. each year as die from all forms of childhood cancers combined

Types of CHD:
Ventrical Septal Defect: A hole in the wall dividing the lower two chambers of the heart

Dextrocardia: Where the heart is on the right side of the body instead of the left

Pulmonary Atresia: Where the pulmonary valve, located between the right ventricle and pulmonary artery is not formed properly. The valve is completely closed, which stops the outflow of blood from the heart to the lungs.

Tetralogy of Fallot: Where the right side of the heart does not develop properly. The parts of the heart affected are the pulmonary valve, right ventricle, and the ventricular septum.

Hypoplastic Left Heart Syndrome: Where the left side of the heart does not develop properly. The parts of the heart that are affected are the mitral valve, the left ventricle, the aortic valve, and the aorta.

Camp Taylor

“Pills and pacemakers keep these kids alive, but Camp Taylor lets them live.”-Kimberly Gamino

What is Camp Taylor Hawaii?
Camp Taylor is a free camp for families who have children with heart disease. It is a camp started in California by Kimberly Gamino, who's son was born with heart disease. It allows many children the one place in the whole world where they feel normal. Two years ago the camp was brought to Hawaii. Teen mentors who have heart disease come down from California and mentor kids from Hawaii with this condition. It is an amazing camp that touches many lives so please donate to make this camp possible!

Camp Taylor website:
http://www.kidsheartcamp.org/

DONATE TO CAMP TAYLOR:
http://www.firstgiving.com/kardiackids

New Meaning

Kardiac Kids

Just Who You Are

Just Who You Are Lyrics

I know there’s times
You want to run away
Sometimes you hurt
But it will be okay

Through it all,
You will find your way

I know there’s times
The pain is hard to bear
You feel you can’t
Go on anymore

But just remember
And just believe
You can make it through anything

You’re stronger than you’ve ever been
Never be afraid of standing out
Be just who you are

You may be different from the other kids
Pacemakers, medicines, and battle scars,
But its part of who you are
Just know that you're
Never Alone
I have been there too
Your strength will guide you through

No matter what
We're always on your side
If you fall down
We'll pick you up again

You’re stronger than you’ve ever been now
Never be afraid of standing out
Be just who you are

You may be different from the other kids
Pacemakers, medicines, and battle scars,
But its part of who you are

Don’t let anyone
Bring you down
You’ve been through so much
Just keep fighting
Just keep fighting

You’re stronger than you’ve ever been now
Never be afraid of standing out
Be just who you
Be just who you are

You may be different from the other kids
Pacemakers, medicines, and battle scars,
But its part of who you are

You’re stronger than you’ve ever been now
Never be afraid of standing out
Be just who you are
Who you are

You may be different from the other kids
Pacemakers, medicines, and battle scars
But its part of who you are
Be just who you are

I Believe...

I believe that children with heart disease are special and God put them here on Earth for a reason. I also believe that these children have resilience and strength, and can bounce back from anything life throws at them. I believe that they are meant to inspire others and despite some extra challenges they may face, they can achieve their dreams just like anyone else.
When I did the interview for my project I asked, “If you could change having heart disease, would you?” I was surprised to here that both the children and parents said that they would never change a thing. Many of the parents said that they thought everything happens for a reason and even though their child may have heart disease, they love them no matter what. Another parent said that they couldn’t imagine a different lifestyle and life without heart kids would be boring. They also felt their child having this condition is one of the reasons that would bring their family closer together. As I observed the families, I could feel the love they had for each other and just how blessed they felt to have their child. For the parents, their kids mean everything to them. They are their parent’s bundle of joy and love of their life. These children have the power to spread their love and sparkle of life to everyone around them.
I think the kids have come to realize that having heart disease is just a part of who they are. It’s taught them to live with compassion and given them strength, strength to fight and to survive. Without this resilience, many of these kids would probably have died, because let me tell you, these kids have gone through a lot, both physically and mentally. They have physically endured doctors visits, hospital stays, medicines, catheters, open-heart surgeries, scars, feeding tubes, stents, and pace makers. They have also mentally overcome struggling to fit in, classmates teasing them, feeling different and left out, not being able to keep up with their friends from fatigue, and people picking out things they can and cannot do. Yet through it all, they stand tall. Their inner strength inspires others. One of the parents said, “Just watching how strong my son is, has made me stronger too.”
Though it is very challenging to be a child living with this disease, if these children never had their medical conditions, the families I talked to would never have met each other. They met through a group called Kardiac Kids, which is a support group for families who have children with heart disease. The four families that I spoke with became extremely close and get together almost every week. I’ve seen with my own eyes the strength of the bond they share. They understand each other and what each other has gone through. They support each other thorough hard times and can relate on a level like old friends or close family. Despite the struggles they face daily, they enjoy life to the fullest. Because the kids cannot engage in extreme physical activities and sports, they put together a singing and dance group called the Mini Heartbeats. I’ve gone to some of their get togethers and these people party like no other! They sing, laugh, eat, and dance the night away! As Keegan, one of the heart kids said, “If we want to dance, we will. We're trying to prove people wrong. We're going to go out there and we're going to dance." God couldn’t have hand picked a more perfectly matched four families than these to have met.
Though all four of these families are not the wealthiest bunch, what they lack in money they make up in heart. There’s an annual heart camp every year, Camp Taylor, and lots of money is needed to fund this camp. These four families are extremely motivated and fight for the camp to happen every year. They fundraise and do everything from garage sales to setting up booths and fundraising websites. Their hard work allows this camp to be held for their families and for other “heart” families.
One of my favorite quotes from Camp Taylor is “Pills and pacemakers keep these kids alive, but Camp Taylor lets them live!” This camp is one of the single places these kids feel completely normal in. It’s a safe haven, a world away from their daily trials and tribulations. It is a camp created just for them, where it’s normal to have a long, zipper scar across your chest, it’s normal to take daily medications, and it’s normal to get tired easily. As one of the camp members said, “When I am at Camp Taylor, I don’t feel like I am the only one with heart problems. I can just be in my own skin and not feel embarrassed about my body.” Before these kids go to this camp, many of them don’t know anyone else with their same condition and feel very alone. When they look around camp and see all the other kids just like them, there’s an immediate connection because they know they’ve gone through similar life experiences and know what it feels like. Ryan Russell, a camp mentor said, “Being part of Camp Taylor has given me a new found sense of self. It has made me comfortable with my disease, no longer alone. I now belong to a community where I most definitely belong, to a unique group of people very few can relate to. People can say they understand what my family and I have been through, but they can’t possibly. Camp Taylor lets you surround yourself with people who “know” what we’ve been through, even if they don’t actually say it.” Camp Taylor gives these kids a place where there’s people they can count on who have gone through similar experiences. Camp Taylor also allows these kids to accomplish things they never thought possible such as a ropes course. People always tell them what they are incapable of or shouldn’t be doing, but at camp they are finally told, “Yeah, go ahead and do it!” It is a place that encourages them to do all they can and helps them to believe they can achieve their dreams.
Though most children with heart disease have endured far more then most will in a lifetime, they still hold on and stand strong. Activities and groups like Camp Taylor, Mini Heartbeats, and Kardiac Kids lets them live their life out to the fullest. I believe that they were given this medical problem as a source of inspiration for all that witness their fight and resilience. Though these kids may never be pro athletes or win a Super-bowl, they’re already winners. They have beaten death and have lived to tell their story and rejoice in their victory.