CHD awareness month: Moms on a mission part deux

 

Today’s blog is from a dear Heart Mama that is almost the “go to” gal for many mamas.

She not only has some great medical knowledge just from her experience as a mom of a daughter with Hypoplastic Left Heart Syndrome…she is a wealth of knowledge on many fronts…latest medical journal…top centers….

She is staunch Democrat. But, during the political race this year, she had the privilege to speak at the Democratic National Convention.

As many of you know, I am a Conservative….but I listened intently to her words.  Because on that night, although she was proudly supporting her political party, she raised awareness for Congenital Heart Disease on a platform that reached thousands.

Putting aside our political view points…

Looking at the problem as a whole for all the people instead of a problem that will help one party or another…

This is my wish for all items that matter in our government.

But, on that night, Stacey spoke from her heart for all the broken ones.

Here is her interview with Kristine McCormick (whom you will get to hear from tomorrow!) – Heart Mom to Angel Cora.

http://corashopesanddreams.org/chd-awareness-hits-the-white-house-the-lihn-family-tell-their-story/

CHD Awareness Hits the White House: The Lihn Family Tell Their Story

Submitted by  on March 25, 2012 – 6:53 pm6 Comments

Update: As a result of this video, Stacey Lihn, her husband Caleb and their two daughters too the stage at the Democratic National Convention. Her speech was live on CNN and many other stations. The reaction has been amazing to see. People are calling her speech the favorite of the convention so far. For most of her speech, the words “congenital heart defects” appeared below her name. Amazing! I’m so proud of her for advocating for what she believes in, and spreading awareness. She told the world about the one in 100 babies with a heart defect.

Here’s the video:

Earlier this month, a video was uploaded to YouTube that featured a congenital heart disease family. I suspect this happens a few times a week. This video was much different. This video was uploaded by the president, well, his staff, but still given how much in the limelight this video has been on the president’s campaign materials, there’s little doubt the president must be CHD Aware by this point. The story told the story of Zoe Lihn and her family, parents Stacey and Caleb and sister Emerson from Arizona, and why they support the Affordable Care Act.

It’s a political video. In the CHD world, we don’t all agree on politics. Some of us are Republicans. Others of us might be Democrats. And then some of us might lean to the Tea Party, or the Libertarians or any other party. That doesn’t matter. Why? Congenital heart disease research, awareness and all related issues are an issue that cross party lines. 

I could write an entire post about this, and started to before hitting the “Backspace” key. The President of the United States and First Lady wrote about the video on their social media outlets. For years, long before I got here, we as a community have wanted a celebrity to mention our cause. Love him or not like him so much, can we get a bigger celebrity than a sitting president?

I had to find out how this all happened so I asked Stacey to answer some questions for  me, and for you. I’m so glad I did because like everything involving the Lihn family, it’s super inspirational. Turns out this all started with a Facebook post!

Zoe Lihn: Born with Hypoplastic Left Heart Syndrome

Cora’s Story: How did the video come about? Did you reach out to someone in the campaign?
Stacey Lihn: Several months ago, I responded to a link posted on the President’s facebook page. The question: “how had the affordable care act affected you or your family?” I wrote a short paragraph about Zoe, her journey and added a link to our family blog (www.thelihns.blogspot.com). Months later, I received a phone call from a producer with the President’s re-election campaign asking me questions about Zoe and her lifetime caps – which were lifted shortly after her birth. After several phone calls over a week’s time, plans were made for them to fly from Chicago to Arizona to film our story.

CS: What was filming like? How long did it take?
SL: The “crew” included the producer and cameraman – two people who really took the time to get to know our family. They filmed our family on and off for 3 days – to capture our ‘real lives’ on a day-to-day basis. It truly felt like they were good friends and we were sad to see them leave. We continue to keep in touch and the producer was truly touched with our journey with CHDs and was astounded by the fact that they’re so prevalent, yet so masked and underfunded.

CS:  You got emotional at one point in the video, what does the Affordable Care Act mean to your family?
SL: Simply stated, life or death. Without the Affordable Care Act, Zoe could be refused insurance for her pre-existing condition. She could be uninsurable after reaching her lifetime cap. Zoe’s defect, HLHS, is extremely costly to palliate.http://pediatrics.aappublications.org/content/128/5/e1181.abstract – a 2001 study on the cost of inpatient and surgical treatment for HLHS). Without coverage, our family would be forced to file bankruptcy, lose our home and all assets (retirement funds, vehicles, etc.) for her to go on state-assistance. It would drive our family into extreme hardship (both financially and emotionally). Not supporting the ACA contributes to the further breakdown of our country.

CS: The video was tweeted by the president and shared widely, what do you think that means for CHD Awareness?
SL: I’m extremely proud for the opportunity provided to our family to spread awareness for Congenital Heart Defects. I’ve received several emails from strangers around the country who support the ACA and ask questions about CHDs and Zoe’s journey. Many have visited our blog and learned of the statistics themselves. CHD parents across the country, whom I’ve never met, shared their story with CHDs and how important this act is to their children and grandchildren. I felt the opportunity to spread awareness could not be passed up – not to mention my firm support of the ACA and the impact I feel it will have on our children’s lives (healthy or not).

CS: Any future plans to continue advocating for the Affordable Care Act?

SL: I will always advocate for the ACA. The outcome of the Supreme Court ruling, oral arguments taking place next week, will determine just how much advocating is necessary. I’m hopeful, just as I am for Zoe’s future, that the SCOTUS (Supreme Court of the United States) will rule in favor of our children and the millions of Americans living with pre-existing conditions, women who are discriminated against on a cost-basis and begin to regulate the private insurance companies who are making outrageous windfalls with in our current healthcare environment.

CS: How is Zoe? How did she like the filming?
SL: Zoe will be 2 years old in May. The fact that we’ve kept her fairly secluded in the past to avoid illness, she very much enjoyed the guests in our home! She was unimpressed with the lights and cameras, which is good because I have a strong feeling she’s not done and will be raising awareness for many years to come.

CS: Is there anything else we should know?
SL: Next week is an extremely important time in our country’s history. The Affordable Care Act will either stay in effect or be struck down (in part or wholly) by the Supreme Court of the United States. I’ve seen the rising care in healthcare costs and not only in Zoe’s care, but in my own. It’s driving our families into significant financial stress and I’m hoping that change is coming soon. Yes, change is scary but all of us know that without risk, there is no gain – we see it every day in the eyes of our heart warriors.

Thank you Stacey and the Lihn family! I have a feeling that this is just the first of great things for Zoe as well. Again, no matter your political leanings, the sitting president of the United States and his campaign staff know about CHD and it’s effects all because one mother reached out. Inspiring much? Go to it!

For every 100 letters, Facebook posts and phone calls, you might only hear back one time, but that one time might be something that opens up a huge opportunity to share your story, and to advocate for congenital heart defects.

And now, without further ado, the video featuring the Lihn family: