Our first child, Madison Rose, was diagnosed at our 20 week ultrasound with the Congenital Heart Defect (CHD) Hypoplastic Right Heart Syndrome (HRHS). The doctors remained positive and Madison was born on June 17, 2016 at Morgan Stanley Children’s Hospital at NY Presbyterian.
After receiving her first open heart surgery, almost 2 weeks after birth, she was listed for heart transplant. She was one day shy of her 12 week birthday when she passed away suddenly on September 8, 2016. Madison never left the ICU while waiting for her new heart. She fought hard and went through more than most people will ever go through in their lifetime during those 2 1/2 months. She had one open heart surgery, 1 cath procedure in addition to countless other procedures, pic-lines, IVs, ART-lines, Echocardiograms, EKGs, blood transfusions and daily bloodwork. She is an inspiration with her strength and perseverance. We miss her so much but carry her with us everyday in our hearts.
We have worked hard since Madison’s passing to continue to honor her by spreading awareness about CHD through our Miracles for Madison and Madison Strong fundraising efforts. Through the inspiration of Madison, these efforts have raised $70,000 total to date. Our sweet girl is making an incredible impact! We have also partnered with Hayden’s Heart Foundation and other CHD/heart organizations. We are co-chairing Hayden’s Heart Annual Golf Tournament this year on Friday, June 9th, 2017 at Preakness Valley Golf Course in Wayne, NJ. This year the golf outing is named “Heart Strong” in honor of both Madison and Hayden. We are currently in the process of setting up our own non-profit called The Madison Rose Heart Project so be sure to follow updates at our Miracles for Madison Go Fund Me Page, where you can read more of Madison’s story and get updates on our formation! https://www.gofundme.com/2fh63ng