Thursday 31 Jul 2014

Information and opinions presented here do not always represent the views of the American Heart Association.

STORIES FROM THE HEART: It can be tough being a kid with a heart problem; author helps ease pain he felt with book aimed at others going through it

Published: 12:39 pm CDT, August 29, 2013

Samuel Ward III wants kids with heart conditions to know they’re not alone.

He knows how they feel because he was once one of them.

The author – who goes by Len, and by the pen name Len N. Wallace – was born with a hole between the walls of his heart.

Shortly after his birth, his mother, Betsy Foster, leaned on a pillow beside him and heard blood pumping through the hole. She vividly remembers that it sounded like water swishing through a washing machine. He was diagnosed with a rare condition known as endocardial cushion defect with a hypoplastic left ventricle.

At that time, open-heart surgery was rarely performed on newborns, so at 2 days old, he instead underwent a surgery called a pulmonary artery banding. Doctors essentially reworked the plumbing around his heart to make it work more efficiently, despite the hole.

When Len was 7, doctors determined the hole could not be repaired, so they sought another way to improve the way his heart functioned. He had another surgery to remove the wall between his two ventricles, creating one large one instead.

Because of his heart problems, he grew up having to be careful not to overdo it when it came to physical activity.

“I got to a point where I knew my limitations and would have to sit out for a while if I started getting too tired,” Len said.

As tough as it was to be on the sideline, it was tougher still not having anyone who could sympathize.

He simply didn’t know any other kids with a congenital heart defect.

***

Finally, at age 15, Len met someone who shared his condition.

In fact, he became part of a camp full of them.

A doctor told Len about Camp Brave Hearts, a summer program in Scottsville, Ky., for kids who have heart conditions or who’ve undergone heart transplants. He was too old to be a camper, so he signed up to be a camp counselor instead. He’s been back nearly every summer since.

“It really changed things for me,” he said.

He saw how the kids at the camp were able to relate to each other and just be kids.

***

Now Len hopes to bring those experiences to more kids through a series of graphic novels.

“The Zipper Club” stories feature four kids who are living with various heart conditions and meet each other at Camp Brave Hearts. They call themselves “The Zipper Club” as a reference to the surgery scars on their chests from heart procedures.

In his books, the kids share their own heart stories and take turns showing each other their scars. Mostly, though, they run around and do things that kids without heart conditions do.

“I want the kids to feel like they’re normal and not isolated like they may be in their real lives,” Len said.

Len also recently started a blog that he considers a companion piece to The Zipper Club. In it, he offers his personal account of continued living as an adult with congenital heart disease.

***

Len was only 4 when he began volunteering for the American Heart Association. Now 30 and living in Louisville, Ky., he shares his story and encourages legislators to support key heart health issues.

The American Heart Association is the nation’s oldest and largest voluntary organization dedicated to fighting heart disease and stroke, the No. 1 and No. 4 killers of Americans. In addition to funding more studies about cardiovascular diseases than any organization outside the federal government, the American Heart Association also annually influences policies nationwide and in each of the 50 states, the District of Columbia and Puerto Rico.

He’s hoping the Zipper Club can help, too.

Len and his collaborator, illustrator Brenda Lopez, have built the stories into a series of five graphic novels. An anthology is being published by Grayhaven Comics, with crowdfunding helping to pay for the first 1,000 copies. It is expected to be released in mid-November.

Len would like to see the books available to kids at doctors’ offices. He also plans to contribute a portion of any profits to the American Heart Association.

“I want this,” he said, “to be a guide to turning any perceived weakness into a profound sense of strength.”

***

Do you know a “Story from the Heart” we should tell? 

Send an email to stories@heart.org that’s as brief or as detailed as you’d like.

Previous “Stories from the Heart” include:

Bride provides lifesaving CPR to drowning toddler at wedding reception

Stroke survivor turned beauty queen raises awareness wherever she goes

Internet’s `PirateGray’ fighting heart disease in honor of her dad

Images courtesy of Len Ward

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