Graham Turner hugs his good friend, Rufus

3...2...1…Liftoff!

Those words were music to the ears of Nancy Turner on October 7, 2002. That’s the day she and her family watched as two teddy bears named Rufus and Ruby were launched into space aboard the shuttle Atlantis. Turner’s son, Graham, is one of an estimated one million children in the U.S. with Type 1 diabetes, and Rufus and Ruby have become beloved ambassadors for many of those kids, spreading awareness of Type 1 diabetes and linking children with the disease in a global fan club of sorts.

The concept for Rufus and Ruby came from a mom named Carol Cramer, whose own son was diagnosed in 1996. She created the first Rufus bear soon after, taking an “average bear” and sewing patches on the four primary insulin injection sites—arms, legs, stomach, and bottom. The result was both a teaching tool and comfort object for her son, as he dealt with the reality of this scary disease.

“She told me that the first Rufus bear was really a healing experience for her,” says Turner. “She needed to be able to do something proactive.”

Cramer believed that other families might find the bears useful.

“She started making the bears with her own money and all of sudden, she was getting huge orders for them,” says Turner. “One day she was in the parking lot in Barrington, Illinois—can you believe it?—and she was walking by a woman’s car and saw a ton of bears in her open trunk. Carol went up and talked to her and it turned out the woman was a sales rep for the RUSS Company.”

That chance encounter brought Cramer and her bears to the attention of Russ Berrie, the chairman of the RUSS Company, himself a Type 1 diabetic. In 1997 Cramer began working for Berrie, making custom Rufus teddy bears for distribution to diabetes patients. Ruby, Rufus’ sister, soon entered the picture as a bear for diabetic girls.

Bears with Diabetes
With their patches and medic alert bracelets, Rufus and Ruby are excellent tools for explaining the rigorous daily demands of managing the disease to children and adults.

Since 1998, families of children with Type 1 diabetes have received Rufus or Ruby bears as part of the Juvenile Diabetes Research Foundation’s Bag of Hope program, which distributes diabetes resources to young patients and their families at no cost. In 2004, the foundation hopes to distribute 10,000 of the bags, thanks in large part to about $1.5 million worth of in-kind donations from the Accu-Chek line of diabetes management products, made by Roche Diagnostics. The bags contain a Rufus or Ruby bear as well as a support video and children’s books. In 2004, an Accu-Chek compact blood glucose meter will also be included.

Bernadette Axelrod’s daughter, Ella, was diagnosed with diabetes earlier this year. Axelrod reports that Ella brought Ruby to school on her first day back. She did a show-and-tell for her class and drew big giggles from her classmates when she flipped up Ruby’s dress. She showed them the patch on Ruby’s rump and announced, “And for those special occasions, you can get your shot here, too!”

Turner introduced her son to one of the Rufus bears less than a day after he was diagnosed when a Bag of Hope arrived at the Cincinnati Children's Hospital Medical Center. In kindergarten, Graham liked to take the bear with him to have his mid-morning school snack. Rufus would sit in one seat, Graham in another, and a 5th grade girl with diabetes in a third. The children would talk about their latest school challenges.

The idea for sending Rufus and Ruby into space grew from Turner's online tracking of Rufus and Ruby's travels. “I was the one in our immediate household who did the coordination with [Cramer] and Children with Diabetes,” explains Turner. “In a lot of selfish ways, it was a chance for our family to have some joy in diabetes when there’s not a lot of joy in it. It was huge—the kids got out of school, we took pictures, and we went all over the space center.”

The Rufus that made the voyage was not Graham’s—he didn’t want his friend to leave his side. The bears on the shuttle were the originals created by Cramer.

The Turner family with Ruby #1, Graham's own Rufus, and Rufus #1 before their departure to NASA

One Family’s Journey
The Turner family has faced its share of challenges since Graham was diagnosed in October 2001.

When Turner, who is a pastor in her Cincinnati, Ohio community, is asked what her personal journey has been like, she responds, “Oh, I have to be careful because I don’t want to scare people too much. I think, in a lot of respects, it can be like going to hell and back again...”

Medical experts say that having a child diagnosed with diabetes is especially scary for parents because their child becomes unhealthy very suddenly. “I had noticed Graham just didn’t seem right; he was having a lot of temper tantrums that just didn’t make any sense,” recalls Turner. “I mean, kids at 3 will raise temper tantrums over weird things, but at 6, you expect something different.”

Graham also began carrying around his blanket and sitting lethargically in front of the TV after school. According to medical experts, dramatic reversions in behavior are sometimes signs of Type 1 diabetes. Nighttime bed-wetting is another classic symptom.

Type 1—not Type 2 According to the Centers for Disease Control, Type 1 diabetes may account for 5 to 10 percent of the 12 million reported cases of diabetes in the U.S. Type 2 is usually diagnosed in adulthood. People with Type 2 diabetes have a reduced ability to produce insulin, but can produce some. Treatment does not always require insulin injections, and the negative effects of Type 2 diabetes can be dramatically reduced through regular exercise and a healthy diet. Type 1 diabetics stop producing any insulin, and must rely primarliy on injections to get the insulin they need. Very careful monitoring of blood chemistry is needed to make sure diabetics receive enough insulin – but not too much. Even with insulin, diabetics are at higher risk of kidney failure, heart disease, adult blindness, and other devastating effects.

Once the Turner family confirmed that Graham was diabetic, a whole new set of challenges arose. “Everything in your life is driven by shots and blood tests and food,” says Turner. “The worst possible thing for me to have to deal with was a needle…I mean, he is a cute little freckle-faced 6-year-old kid and I’m having to stick needles in him—to keep him well. I have to hurt this child constantly to keep him well.”

Turner is hardly alone. Studies have found a steep rise in the incidence of Type 1 diabetes in children under 5 in the past decade. While autoimmune, genetic, and environmental factors are all thought to be involved in the development of Type 1 diabetes, science still cannot explain exactly why it occurs.

Rufus and Ruby to the Rescue
Families can receive a bear in one of three ways: requesting a Bag of Hope from the Juvenile Diabetes Research Foundation, ordering a bear directly from Carol Cramer for $25, or signing up for a visit from an “ambassador bear” sponsored by the Children with Diabetes organization.

The 17 traveling ambassador bears have criss-crossed the U.S. and now also venture abroad—to New Zealand, Australia, South America, Canada, Bosnia and all over Europe. As they visit new families, parents and kids write journal entries that are posted on the Children with Diabetes Web site. Families can see where each of the bears is now by going to the site and clicking on an individual bear.

Laura Billetdeaux, events coordinator for Children with Diabetes, says that any parent who requests a visit from one of the traveling bears will get one, if they agree to two things: To write in the journal during the visit so it can be logged online, and to absolutely promise to send Rufus or Ruby back. (Children with Diabetes pays postage to the family’s home, and the family pays postage to send the bear back.)

Some families have chosen to put goodies in Rufus’ traveling box as souvenirs from the visit. Some enclose articles from their local newspapers about their family, diabetes, and Rufus or Ruby’s visit. Most include photos—which are also posted online.

Resource To get on the bear list, families should e-mail Laura Billetdeaux, and provide their name and address, the name and age of the child who Rufus or Ruby will be visiting, and a phone number.

To date, the bears have visited over 300 families. There is usually a wait of several months for a visit, and there are currently about 50 families waiting. Billetdeaux maintains a master list of names, and pays attention to the bears’ itineraries. “It seems like more of an adventure if you live in Florida and get a visit from Rufus who has just been to Minnesota or Canada or England,” she says.

The Next Journey
The Turners agree that Rufus the bear’s adventure in space opened a new chapter in their own adventure. “That event was a real changing point for our family,” says Turner. “Things just seemed better after that—we knew we could go and have fun and get a kick out of things as a family. And yeah, we’re going to go home and Graham’s still going to have diabetes, but we can still say, ‘Boy, wasn’t that great?’”

Turner says that her family is lucky to have resources to deal with the disease and the costs that come with treating it. “There are 95 percent of parents out there dealing with diabetes [for whom] this is an even bigger challenge than for us. There are a lot of kids out there who have Type 1 diabetes who are not well—they are not healthy kids. There are lots of parents who can’t afford to treat diabetes. Just one tester costs a buck, and we go through 8 of them a day.”

They hope that if more people become aware of how hard the disease can be on families, people will be more supportive of less fortunate families with a child facing Type 1 diabetes.

While the Turners are in awe of their son’s courage in dealing with the disease, Graham doesn’t see it that way. Recently asked about a time he was courageous, he remembered the time two years ago when he had to fish his toothbrush out of the toilet. “In his mind, that was his [most] courageous thing to do,” laughs his dad, “although he has five to eight blood tests and three shots a day.”

Resources

The Children with Diabetes Web site

Learn more about ordering a personal Rufus or Ruby

The Juvenile Diabetes Research Foundation

Rob Capriccioso is a staff writer for Connect for Kids.