Alyssa Rose was born with a Congenital Heart Defect (CHD) called Atrioventricular Septal Defect (AVSD). Although we knew about the defect before she was born, she didn't need immediate intervention. Luckily, she never did show symptoms and we were able to schedule her open heart surgery at 13 months as we watched her right side grow in her monthly echocardiograms as a preventive measure.
At Alyssa's last appointment in February 2018, she was given a great report and does not need another follow up until February 2020! Alyssa loves helping during her check ups and even placed her own EKG stickers! Although this is all great news, there is no cure for CHDs, and she will be monitored for life.
The Pediatric Congenital Heart Association’s mission is to “Conquer Congenital Heart Disease.” We are accomplishing this through collaboration with patients, parents, providers, and partner organizations to improve quality and outcomes through CHD education, support, research and awareness.
Our most active program is Care Package-Conquering CHD Kit, distribution to inpatient cardiac families from infants to adults at Illinois area hospitals. We provided Care Packages at: Advocate Hope Children's Hospital, Advocate Lutheran General Children’s Hospital, Ann & Robert H. Lurie Children's Hospital of Chicago, Comer’s Children’s Hospital, Loyola University Medical Center, Northwestern Memorial Hospital, University of Chicago, and Rush University Medical Center.
PCHA-IL Care Package Kits contain comfort items to these families to help ease the hospital burden, and let them know we are there to support them. We provide cardiac cath comfort kits, prenatal kit to expecting parents of CHD babies, and educational resources. Sadly, many of these heart warriors do not survive, PCHA-IL also provides Bereaved Heart Boxes to the families of a lost to preserve their precious memories.
PCHA-IL is 100% volunteer run. Funds from this event will be used to fuel our growing programs in support of the local heart community. Our walk spreads CHD awareness, celebrates all heart warriors, and remembers the CHD Warriors gone too soon.
For more information, about our National Organization, please go to www.conqueringchd.org
For more information, about our PCHA-IL chapter, please go to www.conqueringchd.org/illinois
GuideStar Non-Profit Organization: www.guidestar.org/profile/81-5401105
