Meet Eli.
In utero, Eli was diagnosed with a congential heart defect (CHD) called Hypoplastic Right Heart Syndrome (HRHS). Though the prognosis was grim and had no guarentees, we entered the world of CHD and began to fight alongside our son.
Here are some stats:
- 1 in 110 babies. That’s the statistic for children born with a CHD.
- CHDs are the most common cause of infant death due to birth defects; in the United States alone, twice as many children die from congenital heart defects each year than from all forms of childhood cancer combined.
- An approximate 100-200 deaths are due to unrecognized heart disease in newborns each year.
- Congenital heart defects are common and can be deadly, yet CHD research is grossly under-funded relative to the prevalence of the disease.
Almost 9 years after our diagnosis, 2 open heart surgeries, mutliple cardiac caths, and 125 days spent in the hospital, I know more about this topic than I ever wanted to.
I know part of my duty as Eli’s mom is to spread awareness every chance I get.
I know many families who fight with us. Some have lost their children but thanks to early detection and awareness, many have not.
I know ALL of the families exemplified strength and perseverance like nothing I’ve ever seen.
I know WE can be part of a relentless force.
Be a supporter of critical research. Be a lifesaver. Be a part of an unstoppable team. Join us now and walk to save lives.
Love, Eli, Amanda, Ryan, and Evlyn
