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.

Friday, February 11, 2011

Team Scarlett


Team Scarlett's logo for Ethan's Run taking place on 2/12/11

It is CHD Awareness Week Day 5. Tomorrow is Ethan's Run - Hope for Heart Defects. It is a 1/2 marathon, or 10K, or 1-mile Fun Run. This is the second year that Heidi and Greg Skidmore have presented this event which benefits the Congenital Heart Foundation and families of the Scott and Laura Eller Congenital Heart Center.  Tomorrow a team of 25 of us will be walking in support of Scarlett and CHDs. Yes, you read that right! 25 people! From as far north as Tuba City, AZ and as far south as Tucson, AZ. Last year for Ethan's Run, I didn't have any support. I walked alone with just Violet and Scarlett.

So this year, I decided to at least ASK my friends, family and co-workers to walk with me. I said we could walk as "Team Scarlett" and I'd even get t-shirts made and everything. To my astonishment, I got takers. 25 takers to be correct. I can hardly wait! I am so excited to have so many people care about Scarlett and CHDs to come out to far, far, far east Mesa, AZ  in the early, early morning and in the cold weather to walk with me and Scarlett. : )

I will post all about it tomorrow after the walk.

This is the Ethan's Run logo.




Ethan Greg Skidmore 2/18/09 - 8/21/09 was born  one day after Scarlett. Ethan and Scarlett were hospital neighbors during their first open heart surgeries. That is when I met his mom Heidi. Heidi told me that Ethan was born with Hypoplastic Left Heart Syndrome (HLHS), which is the worst of the worst when it comes to CHDs. Not only is HLHS one of the worst CHDs, but Ethan's diagnosis was "very severe".  HLHS means that you are born with half a heart. One pumping chamber. It means the left side of your heart is so small that it is rendered useless.  Children with HLHS have to endure a series of 3 open-heart surgeries before age 5 to re-route the tubes in the heart to be able to funtion effectively.

Ethan spent the majority of his short life in the intensive care unit of St. Joseph's Hospital and lost his battle to CHD at only 6 months of age.  I remember the day I found out that Ethan had passed. I believe I cried for 5 hours straight. I can't believe that mother's like Heidi have to lose their children to CHD. I can't believe with medical technology that there wasn't enough they could do for him. I felt so sorry for her and for him. For the tremendous battle he fought.    And I couldn't help but think of Scarlett's fate as well. How much more time do I have with her?... : (   [I know I shouldn't think about things like that, but I do].

In Ethan's memory, his mother Heidi decided to leave a legacy and hold an annual 10K (and 1-mile Fun Run) called Ethan's Run. Last year, Heidi was able to donate $10,000 to the Congenital Heart Foundation raised from Ethan's Run.  She's an amazing heartmom.

There are sill 3 days left in Congenital Heart Defect Awareness Week 2011. Have you done your part to spread the word about CHDs?? Here are some facts to help you educate others:

* Congenital heart defects are America's #1 birth defect. Nearly one of every 100 babies is born with a CHD.

* Congenital heart defects are the #1 cause of birth defect related deaths.

* This year almost 40,000 babies will be born with a congenital heart defect. 4,000 of them will not live to see their first birthday.

* 91,000 life years are lost each year in this country due to congenital heart defects.

* The cost for inpatient surgery to repair congenital heart defects exceeds $2.2 billion a year.

* Congenital heart defects occur frequently and is often life threatening, yet research into them is grossly under funded.

*  Only one penny of every dollar donated to the American Heart Association goes towards congenital heart defect research.

* Of every dollar the government spends on medical funding only a fraction of a penny is directed toward congenital heart defect research.

* The Children's Heart Foundation is the only organization strictly created to fund congenital heart defect research.

* In the last decade death rates for congenital heart defects have declined by almost 30% due to advances made through research.

* The Children's Heart Foundation has directed almost $2 million to 24 different congenital heart defect research projects.

* More than 50% of all children born with a congenital heart defect will require at least one invasive surgery in their lifetime.

* There are 35 different types of congenital heart defects. Little is known about the cause of most them. There is not yet a cure for any of them.

* In the U.S., twice as many children die from congenital heart defects each year than from all forms of childhood cancer combined, yet funding for pediatric cancer research is five times higher than funding for CHD.

Learn the facts! Spread the word! Thanks!

4 comments:

  1. Your child i looking very cute thanks for sharing your their pics. keep posting and updating the pics......


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  2. Hello!!

    My daughter also has ToF, it is so nice to hear your story! We are getting ready to do our second heart walk in about two weeks, and I wanted to get shirts made for our team...and in search for hear images I cam across your blog. I fell in LOVE with your shirt! Did you make the logo, or mind sharing with me who sis make it? I would love to get shirts made like this! Thanks so much=)

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