Shout it to the rooftops!

Lately I can't help but think about everything we experienced this year. About how blessed I am to have Jake in my life. 6 babies have died from HLHS this week, those are just the ones that I know about from facebook. I am angry. I am frustrated. I am heart broken.

Ask most people and they don't know what a CHD is.

CHD= Congenital Heart Defect

This is what CHD looks like.
Jacob post surgery.

This needs to change. I can throw out facts all day long, there are many...

• CHDs are the #1 birth defect and #1 cause of death by birth defect
• 1 in 100 babies are born with a CHD
• 4000 babies born with a CHD won't make it to their first birthday
• Twice as many babies die from CHDs than all pediatric cancers combined yet pediatric cancer gets 5 times the funding.

Why don't people know what a CHD is?
Because children with congenital heart defects look healthy. People look at Jake and can't believe that he only has half of a heart. I am not down playing pediatric cancer so please don't think that. It is horrible and I feel so much for those children and their parents. I am just using it as an example. Everyone knows that kids get cancer. We see it. They show symptoms on the outside. CHDs are so deceiving. Kids with congenital heart defects look like any other kid. Their scars are covered by clothing yet deep in their chest their hearts tell the true story. They are sick. They are fragile. They could be taken from us at any moment.


Until the 1980's there was nothing that could be done for Jacob's heart condition. Now some institutions have a 93% success rate. But that is only for their child to live until age 5. There is no cure for congenital heart defects. My son will always have a single ventricle heart. He most likely will need a heart transplant at some point in time.

February is heart month. I beg each and everyone of you to help educate people about Congenital Heart Defects. We need people to know that they are out there. Knowledge is power. Awareness brings research. So many babies don't make it, many more are fighting this battle everyday. If you think it could not happen to you think again. CHDs know no bounds. Congenital heart defects can affect anyone. What if it were your child?

I plan on shouting to the roof tops. If I can educate one person on CHDs it is worth it. Our children need you. In the 80s HLHS was 100% fatal and now there is a 93% success rate, imagine what we could do in another 30 years. Spread awareness, Save lives!

Will you help me?

What I am doing:

• TV interview with WCHS8/FOX11 which will be part of a series the American Heart Association is doing on Survivors of Heart disease. We filmed this today and I have to say that Jake rocked his first interview! (Air date and time will be posted later)
• Article in the Go Red section of the newspaper promoting CHD awareness.
• Interview with WSAZ channel 3 to air on CHD awareness week (Feb 7th through 14th)
• Heart Ball (Jake's story and why its so important to donate)
• Daily Mail (Newspaper) article on Jacob's Journey
• Heart Walk: April, Huntington WV
• Heart Walk: September, Charleston WV

What you can do:

• Tell someone about CHDs.
• Donate blood.
Children being treated for cancer, premature infants and children having heart surgery need
blood and platelets from donors of all types, especially type O.
• Donate to help fund CHD research:

American Heart Association
Children's Heart Fondation
Congenital Heart Information Network
It's My Heart
Little Hearts
Mia Marrone Heart Fondation
Mended Little Hearts

Thank you for supporting Congenital Heart Defect awareness!