Eliana was born October 2016 in Singapore. She has HRHS, TGA, VSD, PS and is DILV. she was able to skip the 1st stage surgery and had the Glenn at 6 months old in Singapore. she ha traveled to 9 countries! We are now in chicago being followed at Luries trying to gain weight and awaiting the Fontan.
The PCHA-IL chapter is a program of PCHA, aimed at improving the lives of those with congenital heart disease and their families through direct support and education – meeting families where they are.
Through our State Chapters we are able to give knowledge, give a voice and give hope, directly meeting the comprehensive, lifelong needs of patients with congenital heart disease and their families through support, education, advocacy and research programming.
Local activities include:
-Conquering CHD Kits offering critical information and a personal connection for patients with CHD of all ages through individualized care packages
-Online chat networks bringing people with similar experiences together
-In-person peer support offering patients and families encouragement and insight from someone who has walked a similar path
-Social events providing a safe environment to celebrate life and simple joys together
-Physician education improving understanding of congenital heart disease from the patient and family perspective
-Research promotion and participation helping promising developments become reality
-Advocacy activities sharing our stories to improve federal research funding.