ABOUT LITTLE HEROES LEAGUE
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 medically complex babies like Livi achieve their best life outcomes.
In her first 8 months, Livi spent 128 days in the intensive care unit spread over three visits that required two heart surgeries (one open heart), one intestine surgery, intensive vision and hearing tests and numerous sedations. 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 a care coordination for infants with medical complexity and their families to address this critical need in the hospital, at home, and in the community.
babies with high-level medical needs stand to benefit considerably from well-orchestrated care at the very beginning of their lives.
Why We're Unique
Babies with high-level medical needs are under served and stand to benefit considerably from well-orchestrated care at the very beginning of their lives. Many public and private insurers do not identify these babies immediately after they are born, and can take 6 months or more to offer them care coordination assistance, if they offer it at all. This means that the most critically ill newborns who require multiple complex treatments cannot receive care coordination covered by insurance during this critical developmental time in their lives. The Little Heroes League will provide funding to our partner hospital, Lurie Children’s, to provide care coordination during this critical period and after discharge from the hospital.
In the Chicago region, Lurie Children’s treats hundreds of newborns with the most complex needs because we have a highly specialized Level III Neonatal Intensive Care Unit. And we will care for even more of these very sick children when our critical care units expand in 2019.