What is Little Heroes League?
Kristin and Brenden Etue, members of the Orangetheory Fitness Old Town community, had their daughter Livia Regan Etue on March 27, 2017. This little warrior princess was born with CHARGE syndrome. She has a clift lip and palate, several severe heart defects, intestinal issues, and vision and hearing loss. In less than 2 years of life, she has spent over 350 days in an intensive care unit, undergone 17 separate procedures (including 2 open heart surgeries), and had countless number of tests performed on her. While home, Livi sees 4 different therapists and returns to the hospital multiple times a week for check-ups. Her parents manage 10 different meds administered multiple times throughout the day and coordinate delivery of required equipment.
The term used for such children is “Medically Complex Children. It is grueling emotionally, physically and financially for the family, but Livi is thriving because her parents coordinated her care. Unfortunately, not all families are as fortunate to have flexible jobs that allow them to work from the hospital, financial means, close proximity to the hospital, good insurance, speak fluent English, and accessible travel. As a result, these kids and families don’t always thrive, and the kids suffer. Livi’s family wanted to change that for all families receiving care, so they’ve created Little Heroes League – a 501(c)(3) organization affiliated with Ann & Robert H. Lurie Children’s Hospital of Chicago. Their mission is to help babies born with multiple health challenges achieve their best life outcomes by providing care coordination from the day they are born. By providing care coordination, they accelerate the care for these children and enable the children to spend more time at home where they thrive. The program has been serving families since August, 2018, and has already experienced tremendous success. The hospital has called this program “revolutionary,” and are already evaluating ways to change the way they provide care based on the early success of the LHL program. There are currently 21 families served in this first-in-country program and LHL plans to aggressively expand the number of families impacted in 2019.
Please help us in doing everything we can to ensure these kids achieve their maximum life potential. We are aiming to raise $20,000 at this event with the support of over 150 local Chicagoans. For more information please go to www.littleheroesleague.org.