Please note FJC is my philanthropic partner and all funds raised will go through them to be received by my nonprofit, CHD Babies.
My initiative for my 2019 PROJECT CHD:
* Raise $25,000 for my CHD Babies Fund for CHD Research at Children's Mercy Hospital
* Raise $25,000 for the CHD Families Inpatient Fund at CMH to support heart families with hospitalized CHD Warriors
The NonProfit – CHD Babies (http://chdbabies.com)
CHD Babies was created in 2009 after my daughter Chloe was born with 4 life threatening heart defects. I had never heard of a heart defect before Chloe was born, let alone an infant needing life-saving open heart surgery. I started my nonprofit and informational website to support new "heart families" like mine and connect with veteran "heart families" and share all things CHD. There are a handful of different CHD organizations across the world making a difference and I’m thankful to be one of them.
The Missouri Senate Bill - Chloe’s Law for Pulse Oximetry Screening
Pulse Oximetry Screening measures the oxygen in the blood. For adults, it is the plastic clip that attaches to the finger. For babies, it is a soft bandage with a painless sensor attached to it and they wrap it around the foot. Normal oxygen levels are 95%-100%. Chloe’s oxygen levels were around 58%. She had NO signs or symptoms of low oxygen. She was not struggling to breathe, her heart rate was normal, she was not blue, etc. It was my intuition that had her sent to the nursery to be monitored in the first place. If she hadn’t gone to the nursery, we would have taken her home thinking she was a healthy baby. I began to wonder why a fast and painless screening wasn’t done on every single baby after birth? It scared me to think this could happen to another family. It became my mission to have Pulse Oximetry Screening mandatory on all newborns across the US before leaving the hospital. That is how Chloe’s Law began. I began working on Chloe’s Law in late 2009. Missouri was the first State to introduce this life-saving bill, and my first attempt at getting it passed was 2010. Myself and my State Representative introduced the bill again in 2011, 2012 and 2013 sessions. During that time, the power of social media helped spread the word about Chloe’s Law. Since then, many other States followed and now 44 other states have passed their own CCHD Screening bills and now screen their babies for CCHD. Chloe’s Law finally passed in 2013 and went into effect January 1, 2014.
The CHD Awareness Event - Run for LITTLE Hearts - (www.runforlittlehearts.com)
My inaugural run was in 2014 with 400 attendees. In 2015, it grew to 650 attendees. In 2016 the number doubled to 1200 attendees. And in both 2017 & 2018 we had over 2,000 attendees! All my time is pure dedication and passion, with 100% of the funds donated locally.