CHICAGO (CBS) — Birthdays are a big deal for children, with plenty of cake and lots of presents.
But one little girl, on her first birthday, is giving back to others who are struggling so early in life–despite the challenges she faced herself.
As CBS 2’s Mai Martinez reports, Livi is quite the fighter, enduring three open chest surgeries and two open heart surgeries.
“Every day that she’s here with us, I’m so forever grateful,” said her mother, Kristin Etue.
Livi was born with a very complex genetic disorder called charge syndrome. She’s suffered from heart and stomach issues as well as hearing and vision loss–all in just her first year of life.
She has only been at home for five months.
Dealing with all of her daughter’s medical needs was overwhelming. That’s why Kristin and her family founded the “Little Heroes League” in honor of Livi.
“Because of what they went through, we just don’t want to see this happening again, and healthcare just doesn’t cover it,” said Livi’s grandmother, Kim Ulaszek.
The foundation will help other families with babies in the neonatal intensive care unit at Lurie Children’s Hospital–no insurance needed.
On Livi’s first birthday, they presented Lurie’s with a $310,000 check to fund the first year of the program.
The money will be used to pay for two nurses and a social worker to help families deal with treatment at the hospital and help them transition to home care–all free of charge.
“[Livi’s] the epitome of perseverance, determination, strength, and just beauty,” said Etue. ‘We were so lucky to have her in our lives. She’s taught us so much.
Livi’s prognosis is good, and the family hopes she can leave the hospital in about two weeks.
The goal is to raise $1 million and officials say this is the first program of its kind in the country.