On Saturday, Mayo Clinic invited families, researchers, and clinicians to Feel the Beat: an event aimed to raise awareness about a rare congenital heart disease.
Hypoplastic Left Heart Syndrome is heart disease where the left side of a child’s heart, the main pumping chamber, is severely underdeveloped.
If it’s not surgically corrected within a week or 10 days from birth, a baby can can die from the syndrome.
Michelle Waletzko’s son Isaac was diagnosed with HLHS prenatally.
"He was born early, he had some other issues so he was better out than in at that point," she said.
"I was diagnosed when my mom was probably about 7 months. You just take one step at a time, and you slowly work the way through and you figure it out as you go," said Gabrielle Wanek, a 23-year-old living with HSLS.
The event at the Gonda building helps connect kids and families in the HLHS community to share their experiences with each other.
"Medicine is ever advancing. Things that they didn’t think were going to happen 30 years ago are happening and our kids are growing," Waletzko.
Families from across the US heard from HLHS patients, physicians, and researchers at the event.