This is a blog for my daughter Scarlett. She was born with a complex congenital heart defect known as Tetralogy of Fallot with Pulmonary Atresia. She is my little hero.

Monday, February 7, 2011

CHD Awareness Week 2011

Today is February 7th, and that means it is the first day of "Congenital Heart Defect Awareness Week". Which  means that I will be doing my part to help spread awareness and be an advocate for my daughter, a CHD survivor. (more than I ordinarily do, of course!)




This past summer I bought some t-shirts online from cafepress.com, One says: "I'm a heart surgery survivor" and the other says: "My sister is a survivor". Scarlett also has another onesie that says "I'm beating Congenital Heart Disease". They were kinda pricey, but they worth every penny, because I love putting them in their CHD Awareness t-shirts. Last Saturday I took them to the zoo and they proudly wore their t-shirts.

These pictures were taken by zoo photographers that are available to snap a shot as soon as you enter the zoo.

Several weeks ago, I wrote (emailed) Arizona's governor Jan Brewer and asked her to proclaim February 7-14 as CONGENITAL HEART DEFECT AWARENESS WEEK in the great state of Arizona. There is a proclamation form that you can fill out online. I did this at the suggestion of the Congenital Heart Information Network. and to my delight, it (the proclamation) was received and approved. Not only that, but I also heard that I am not the only heartmom to make such a request. I was told by the governor's staff that I was one of at least 6 other people who submitted this request.  I believe that it's been done for at least the last 4 years. Awesome!


Don't now if you watched the Superbowl yesterday, but if you did, then maybe you saw the commercial with the little kid Darth Vader. In case you missed it, here it is:

Well, I just learned today that the little boy that portrays Darth Vader was born with Tetralogy of Fallot and also has a pacemaker! He is 6-years-old and lives in California. His name is Max Page. Here is a news story they did about him on the Today show this morning:



How awesome is that to kick off CHD Awareness Week?? :  )


Well, tomorrow is Scarlett's cardiac catheterization. I'll be blogging from the pediatric cardiothorascic Intensive Care Unit of St. Joseph's Hospital (during CHD Awareness Week). I will post more about CHDs, and more about how Scarlett's heart cath goes tomorrow. Until then, please do you part and help me spread awareness about America's #1 birth defect. Thanks!

2 comments:

  1. LOVE the t-shirts!!! Exciting to hear the proclamation was approved. How fitting that that commercial came out so recently only to find out he has a CHD. Posted a link to your blogpost on my facebook page. I will be praying for Scarlett and you all tomorrow.

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