Tag Archives: hypo-plastic right heart syndrome

Evan Sheiber’s Joyful Life

Evan Sheiber was born with hypo-plastic right heart syndrome. That means he has a single ventricle — half a heart.

He’s not yet 4 years old. But last March the young Westporter underwent his 3rd open heart surgery.

It’s not a cure. Children born with this syndrome eventually require a heart transplant. The goal is to avoid the operation until absolutely necessary.

Evan Sheiber

After Evan’s open heart surgery, he has more energy. He keeps up with his identical twin James. He climbs, plays on the playground, and runs away from his parents at bedtime.

Yet he slows down more quickly, breathes more heavily, and has foot and leg pain.

Evan’s mother Britt notes other challenges too. A simple cold sent him to the emergency room. The flu can be devastating. She is always alert to danger.

Thirty years ago, most babies born with half a heart did not survive. But as far as medicine has come, there is much more to learn.

Britt has helped Dr. Rahul Rathod, director of the Single Ventricle Program at Boston Children’s Hospital, raise money for research and a registry.

With strong support from Westport, she has raised over $150,000.

Now Britt is preparing for JoyRide’s 4th annual Cycle for Heart event, on Sunday, February 9 (11 a.m.). There’s a raffle too, with donations from businesses like Rizzuto’s, Granola Bar, Organic Market, Saugatuck Sweets, SolidCore and SheLaLa.

To join the JoyRide event — or contribute without spinning — click here.

Click here to learn more about the FORCE Fund (formerly known as Evan’s Heart Fund), which directly impacts the lives of everyone like Evan living with a single ventricle.