Jack Long — Live LONG

Vivien Williams: When Hurricane Sandy slammed into New Jersey, the Long family braced for two storms — the water and winds that raged in their town and their fears about the health of 14-year-old Jack.

Michael Long, Jack’s dad: He needs to have surgery. And we were like, you could have picked us up off the floor.

Vivien Williams: Jack needed open heart surgery to repair a rare congenital heart defect called Ebstein’s anomaly.

Jack Long, patient: … really nervous and kind of scared.

Vivien Williams: Even though Jack was born with the condition, he didn’t have symptoms until he was a teen and only when he played sports.

Jack Long: … harder to breathe and I got tired a lot faster.

Michael Long: We know that doing the surgery now prevents damage in the future.

Vivien Williams: The surgery that helped Jack was performed by a specialized team at Mayo Clinic.

Ben Eidem, M.D., Cardiology, Mayo Clinic: Jack was born with a congenital heart defect called tricuspid valve dysplasia or Ebstein anomaly. And that’s one of the four valves in the heart, called the tricuspid valve, but when his heart was forming as a fetus, just didn’t form correctly.

Vivien Williams: Dr. Ben Eidem says the tricuspid valve’s job is to allow blood flowing into the heart from the body to flow to the right ventricle where it’s pumped to the lungs for oxygen. If the tricuspid valve is leaky, blood can flow backwards causing the heart to pump harder. Over time, the heart becomes enlarged and functions poorly.

Joseph Dearani, M.D., Surgery, Mayo Clinic: So the idea with surgery is to try to halt that process.

Vivien Williams: Surgeon Dr. Joseph Dearani performed Jack’s operation, called the cone procedure. During the operation, Dr. Dearani isolates the deformed leaflets of the tricuspid valve. He then reshapes them so they function properly.

Jack’s surgery was a success. He’s back to playing soccer and catching waves. But his story doesn’t end there. Before his operation, Jack decided to make a difference. With the help of family, friends and a teacher, he started a foundation.

Jack Long: It says “Live LONG – Beat STRONG” to find a cure for any of the congenital heart defects just so you can help kids, anybody, have a better life.

Vivien Williams: He sold bracelets for $2.00, t-shirts for $10.00. His mom, Karen, remembers Jack asking …

Karen Long, Jack’s mom: He goes, do you think we’re going to get close to $1,000? Do you think we’ll break $1,000? And I said, yeah, I think we could probably break $1,000.

Jack Long: And I would count it every night and look to see how much. I’m like, we could actually make a change here. We could make a difference and help other people.

Vivien Williams: People from Jack’s small coastal town that was ravaged by Hurricane Sandy, lined up to donate.

Karen Long: People dropping off checks and they’re not even living in their homes. Dropping of checks to us … to support Jack.

Vivien Williams: He raised well over $1,000.

Jack Long: Just about $10,000.

Dr. Dearani: The thing about Jack’s story to me that is the most precious is that it wasn’t about him, for Jack. It was about everybody else.

Jack Long: I’m just happy that we could not just help me get through it but help everyone else.

Vivien Williams: For Mayo Clinic News Network, I’m Vivien Williams.