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Children with Diabetes, All Grown Up

A type 1 diabetes group becomes a community

In 1998, the day after Laura Billetdeaux’s son Sam was diagnosed with type 1 diabetes, his diabetes educator pressed a business card into her hand with the URL of the Children with Diabetes (CWD) website. She told Billetdeaux, “I know you like the internet. Go to this website. Read. Learn. Connect with other moms and dads.”

At around 7:30 that night, Billetdeaux clicked onto the CWD website for the first time. She quickly learned the online community was created by Jeff Hitchcock in 1995 after his daughter Marissa was diagnosed with type 1 diabetes. The idea was – and continues to be – to share experiences with other families so that together they can make a difference in the lives of kids who are living with diabetes.

“When I first logged in, I found an area called ‘Friends,’” Billetdeaux said. “My initial post said, My name is Laura and my son, Sam, was just diagnosed with type 1 diabetes. We just got home from the hospital, and I am so scared.” The responses started coming in right away. Within a half hour, there were dozens. They all said pretty much the same thing: “It’s going to be okay.”

Billetdeaux’s first night in the CWD community had brought her emotional support and answers to questions, so she continued to log on. When she planned a family vacation to Walt Disney World® for June 2000, she thought it might be fun to meet up with a few other people from the community. She sent a note to the CWD e-mail list, asking, “Would anyone like to join us?” Five hundred and fifty people came. That was the first gathering of the annual Friends for Life conference, which has become a key event for the type 1 diabetes community.

Friends for Life was so successful that Laura left her job as a speech-language pathologist to oversee the conference full time in 2002. “The jobs actually aren’t that different,” she says. “They’re both based on communication… In my current role, the biggest thing I do is connecting families and people with type 1 diabetes to each other, to the faculty who have so much knowledge and information, to the exhibitors and sponsors who develop the tools we use to stay healthier and make our lives easier.”

Many of the children with diabetes at the first Friends for Life gathering fourteen years ago are now adults living with diabetes. There are now topics, speakers, and activities at the conferences designed for adults. “CWD has grown up. It had to,” Billetdeaux says. “[CWD founder] Jeff Hitchcock and I – and most of our staff – started our efforts when our kids were little. They are now adults, so their (and our) perspectives are different.”

Billetdeaux’s son, Sam, is now twenty-three and works in the elementary and teen programs at CWD conferences. Her daughter Carolyn, now twenty-six, helps coordinate the conference program for siblings, and is a leader for the tween group, ages ten to twelve. Marissa Hitchcock, Jeff’s daughter, is a registered nurse and a teen program leader at Friends for Life. Dozens of other CWD alums have returned to volunteer as staff at CWD conferences.

“CWD is a living, breathing, growing family of thousands,” Billetdeaux said. “It’s an amazing thing watching the kids grow up. I’m so proud of every one of them.”

Jessica Apple is the co-founder and editor-in-chief of the online diabetes lifestyle magazine A Sweet Life. Her writing has appeared in many publications, including The Sunday New York Times Magazine, The Financial Times Magazine, The Southern Review, The Bellevue Literary Review, and Tablet Magazine. Apple is a paid contributor for The DX. All opinions contained in this article reflect those of the contributor and interviewees, and not of Sanofi US, its employees, agencies, or affiliates.

© 2013 The DX: The Diabetes Experience

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