2014 Heart Walk & Changes for AHA?

This post is WAY after the fact, but I still wanted to write about it anyway.  In September we got to participate in the American Heart Association Heart Walk.  It was the third one I’ve participated in since we found out Nolan would be born with HLHS and the event holds a special place in my heart.  Nolan was definitely ready to walk:



And big brother Hudson was supporting his little guy:


Before the start of the walk we were approached by a woman (I will never remember her name) who asked us about Nolan and said her daughter was born with a single ventricle and was now living in her 20’s.  That was so refreshing and uplifting to hear: I love every glimmer of hope we can get that there is a successful life ahead for our CHD babies.

Then the walk started, and the start of the Heart Walk is – for me – so very emotional.  They start the countdown from 10 and it just brings me back to that time where it was just me, walking for my unborn son, facing a whole lot of unknown ahead.  Now we get to walk with Nolan and it’s all kinds of awesome.  My mom joined us for this walk and I was really proud of Hudson, who walked the entire route.


This time, though, the walk was just a little different.  I remember 2 years ago there were tons of volunteers along the route: they would cheer us on with pom poms and all that.  There were several water stations.  This year there was one water station and the few volunteers along the route just kinda stood there staring at us.  It was weird and ended up giving the walk a little bit of a “meh” atmosphere.

Most importantly, though, I feel there’s something I need to admit: this year I didn’t do any fundraising for the Heart Walk.  Didn’t even attempt.  I know that sounds pretty messed up, but here’s my reasoning: while the American Heart Association uses CHD all throughout their website and advertising, they only use 1% of the funds they raise towards CHD causes.  ONE…PERCENT.  That’s horrible.   I will continue to do the Heart Walk ever year, if possible, because it will always hold a sentimental value for me…but until this paltry support of CHDs by the AHA continues, I will not fundraise for them.  American Heart Association…you need to do better.

There is, though, a glimmer of hope in this regard.  On October 31st, the Children’s Heart Foundation announced a partnership with the American Heart Association to further CHD research.  According to the press release (http://childrensheartfoundation.org/sites/default/files/AHA%20CHF%20Partnership%20Release.pdf) they will hope to provide $2.5 million in grants over the next 2 years to support CHD research.  Good.

It’s put up or shut up time for you, American Heart Association, and I really appreciate this start.  Keep it up and put your might behind our heart kids…so they can grow up to be thriving adults and one day we will live in a world with no CHDs.

About Chris Perez

My name is Chris aka HLHS Dad: I’m married with 3 sons. I love coffee and Yankees baseball. Be kind to one another.

Posted on November 14, 2014, in awareness and tagged , , , , , , , , . Bookmark the permalink. Leave a comment.

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