TEAM GUS is back and in our 8th year of walking with The Children’s Heart Foundation in the fight against Congenital Heart Defects! 

Before we say anything else…Gus is doing great!  He’s healthy, happy, headstrong, as kind as he can be (maybe don’t ask his sister about that), funny, and hard-working! He’s finally putting his head underwater at the swimming pool and sometimes reads without being asked…now, if he’d just let us pull that insanely loose front tooth…

We remain grateful every day for the amazing kid Gus is and grateful for the Children’s Heart Foundation’s work in the lives of the children and families affected by CHDs.

The Children's Heart Foundation is the country's leading organization solely dedicated to funding congenital heart defect research.  As more is being done to learn about the causes of CHD’s, we’re recognizing the ongoing challenge of helping more and more Heart Warriors who are surviving into adulthood. 

It’s a tough thing to think about.  A correction of a CHD doesn’t make it a cure.  Aside from potential long term health challenges, there are often other long term struggles hidden within a disease that generally has no outward or visible sign. That’s what makes it so crucial to continue to research and find better solutions for our survivors.  

As we’re discovering, some of the longer term challenges Heart Warriors face include:

• Neurodevelopmental and neuropsychological disorders.
• Children with more complex CHDs are five times more likely to receive an anxiety diagnosis in their lifetime compared to children without CHD.
• For adults with CHD, the rate of experiencing a mood or anxiety disorder in their lifetime is about 50%, compared to about 30% for adults in the general population.

We’ve been very lucky.  Our cardiologist told us about the Neuropsych Clinic at Cincinnati Children’s Hospital.  Gus has met with them and we’re keeping on top of helping him have the best school experiences possible.  It’s part of what keeps us so passionate about the work of the CHF.

So much still to do.

With gratitude, 

Matt, Michelle, Ruby, and Gus