Dear Friends and Family,
As most of you know our younger son Parker was diagnosed in July 2017 with two congenital heart defects and will be having Open Heart Surgery this upcoming June. Ben and I have been so thankful to be supported by our wonderful Cardiologist Dr. Uhl, our cardiac team at Lurie's Children's Hospital as well as Boston Children's Hospital. We are especially thankful to Parker's Endocrinologist who found Parker's irregular heart beat.
Parker's heart conditions are not rare but often goes undetected until a child is in his or her teen's and collapses on a sports field where it may often be too late. We are incredibly grateful for the early detection of Parker's condition, and although no parent wants to have their child go through Open Heart Surgery, we are thankful he will have done at a time when he is young, and can go on to live a full sports filled healthy and fun life.
1 in 100 children children are born every year in this country with a Pediatric Congenital Heart Defect. It is incredible how far we have come in the care and treatment for these defects but we have so much farther to go. We must continue to raise funds to support research and support for families and children afflicted with these diseases.
Please join us either in person or virtually at the Pediatric Congenital Heart Association, Illinois Chapter on May 19th as we walk to raise funds for this amazing organization.
Love, Nicole, Ben, Parker and William
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
