Everyone likes to think that their child is special, unique, one of a kind. Usually this is a good thing. For us, our daughter Sloane’s uniqueness became apparent on May 9, 2019 when the ultrasound tech kept lingering over an area of her then in utero body during an anatomy scan. Although the tech had her best poker face on, it became obvious that something was wrong, very wrong. From that moment on, our lives have never been the same.
The world of congenital heart defects was completely foreign to us when we first started walking down its path six years ago. It became the proverbial birth by fire. Life was soon consumed with echos, specialists, and second opinions, not to mention researchers. Even while in utero, we enrolled Sloane in studies that were being conducted by the Mayo Clinic. What we knew was 30-40 years ago almost all kids born with Hypoplastic Left Heart Syndrome (HLHS)--Sloane's umbrella heart term--died, and the only reason most were no longer dying was because of research and medical advancements. But while immense progress has been made into HLHS, there was still no cure for it--just a staged palliative surgical approach to allow these HLHS kids to live a compromised quality of life with their Frankenhearts. This is the predicament we were in and this is the predicament we still find ourselves in: how do we keep kicking the can down the road long enough to allow science and medicine to catch up in a meaningful enough fashion as to give our daughter both quantity and quality of life?
One of the key elements of that "how" is frankly money. Progress is the direct result of research which is the direct result of funding. No funding means no progress and uncertain futures for all kids living with congenital heart defects, but especially those like Sloane who had the unfortunate luck of being born with complex defects. We live in a time when the technology and know how exist to make seismic breakthroughs, but we also live in a time when academic and federal research is being gutted. Each and every one of us must keep this research ship afloat and The Children's Heart Foundation is one such vehicle (no pun intended!) for doing so. The Children's Heart Foundation has the crucial mission of advancing the diagnosis, treatment, and prevention of congenital heart defects through groundbreaking research. I ask you now to join me in becoming part of this significant journey by supporting my fundraising efforts.
Thank you for your generosity and for standing beside me in this mission. It means everything.
