Dear Friends,

Striver just started 3rd grade. He is thriving academically but is struggling socially, mostly due to his rejection sensitivity (often called RSD), which is correlated with AuDHD. It is something we deal with every day, and it is very stressful for him and sad for us. 

This may seem unrelated to our heart journey, but there is a real, well-documented association between complex CHD—particularly single-ventricle/Fontan physiology—and neurodevelopmental differences including ADHD and autism-spectrum traits/ASD. The American Heart Association (AHA) specifically identifies executive dysfunction, ADHD, and problems with social cognition, including interpreting emotions, social situations and relationships.

As far as Striver’s physical health, he had an elastography early this year to measure the stiffness and scarring of his liver. Results indicated Fontan Associated Liver Disease (FALD) and more damage than we anticipated. We started on an experimental medicine we hope will take some strain off his liver. We have to wait until 2027 to see if the damage is slowing.

While there is tremendous investment in heart disease, single-ventricle defects affect a much smaller population, meaning there are fewer market forces driving the development of new drugs, devices, or treatments for Fontan patients.

We are walking for the Children’s Heart Foundation (CHF), a broad CHD research funder, which has meaningful Fontan and single ventricle projects. CHF has helped fund:

• Dr. Mark Rodefeld’s work on an implantable Fontan blood pump.

• Work exploring a biologically contractile conduit that could potentially help propel blood through the Fontan pathway.

• Programs focused on lymphatic disease/PLE, regenerative stem-cell therapies and other research capable of benefiting Fontan patients.

• Partnerships to create dedicated Fontan/single-ventricle research awards.

Medical research is our greatest hope for Striver, and breakthroughs happen because of fundraising and people like you. Asking for money every year is incredibly uncomfortable, but this is why we keep doing it. Whatever you’re able to give, no matter the amount, means more to us than you know. If you can’t donate, we always appreciate prayer. Thank you, always, for loving our boy and supporting our family.

Love,

John, Meg, Striver & Bridge