Inspired by the journey of their granddaughter Livia, Kim and Will Ulaszek founded a charity, Little Heroes League, an Affiliated Organization of Ann & Robert H. Lurie Children’s Hospital of Chicago, to help babies born with medically complexity like Livi achieve their best life outcomes.

In her first year of life, Livi spent over 150 days in the ICU spread over four visits that required three heart surgeries (two open heart), one intestine surgery, intensive vision and hearing tests, numerous sedations, and countless therapies. She spent 12 weeks on a breathing machine and 51 consecutive days without being held by her parents. And she’s only just begun her journey.

Livi and children like her thrive at home. To enable Livi to maximize her time at home, her parents coordinated doctor visits, in and out-patient therapies, medications, feedings, surgeries, and federal and state resources – all while maintaining full-time jobs, navigating the complex healthcare and insurance systems, and going through the most emotional time of their lives. Livi is thriving because her parents made care coordination of her medical needs a priority.

That’s why Little Heroes League was founded: to enable infants born with a distinct disadvantage to thrive and live their best lives. Little Heroes League, with our partner Lurie Children’s, will implement a first-in-the-country program to provide care coordination for infants with medical complexity and their families to address this critical need in the hospital, at home, and in the community.