CT family raises money to find cure for daughter's serious heart condition

NBC Connecticut

By Jolie Sherman • Published May 17, 2024 • Updated on May 17, 2024 at 6:32 pm

Click here to see article on NBC Connecticut

It's been a long road for the Greenfield family whose young daughter Shea has a serious heart condition.

"When she was born, her heart stopped, and they had to resuscitate her at the hospital," Shea's mother Kira Greenfield said. "It was about 15 to 20 doctors, and they said, 'your daughter's heart is not in a good place.'"

The day Shea was born was the day her parents found out she had something called Long QT Syndrome, which causes irregular heartbeats.

"When that happens, your heart then tries to scramble and catch up, and eventually keeps going back and forth, and your heartbeat goes faster and faster - kind of into a chaos," Shea's father Mark Greenfield said.

They say this can lead to fainting, seizures and cardiac arrest.

"Soon after, we found out she does have Long QT Type 2, and a very, very severe form of it. One of the most severe forms doctors had ever seen in a newborn," Shea's mother said.

For Shea and her family, it's a life full of long hospital stays, visits with doctors and medication around the clock. Shea also sleeps with a heart monitor on her foot and needs an AED nearby at all times.

"We also just live with the anxiety of, you know, is this next heartbeat, is that going to be her last?" Shea's father said.

With no cure yet, the Greenfield family has made it their mission to help their doctor find one.

"We got connected to doctor Michael Ackerman...who has committed most of his career to trying to find a cure. I said to him, 'what can we do right now because we want to do more,'" Shea's mother said.

Shea's parents said that's what inspired them to create the Hearts in Harmony Foundation and their annual fundraiser called Shake it for Shea, a gala that benefits Dr. Ackerman's research lab at the Mayo Clinic.

The first gala was held last year, and they raised more than $290,000.

"Shea has one gene that has this disorder, and his goal is to basically take that gene out of her body, replace it with a healthy gene, which would then eliminate with the Long QT Syndrome from her other genetic makeup," Shea's father said.

The family plans to bring the community together again this year to continue their fundraising efforts and celebrate their daughter whose precious heart has made them see just how precious every day is.

"Shea has taught us, one of the biggest silver linings is never take a moment for granted," Shea's mother said.

The second annual Shake it for Shea Gala is at the Warehouse FTC in Fairfield on Thursday, June 6 from 7:30 to 11:30 p.m. Tickets are $200 per person. For more information, click here.