It was June 19th, Brian’s birthday. When I woke him up and he said to me ‘have they found a cure for diabetes?’ and I said, ‘No, but we mustn’t give up hope’.  Then Brian said to me, ‘It’s not my birthday, because I promised myself that there would be a cure by the time I turned five.’ I was heartbroken. My immediate response was, ‘I’m calling the juvenile diabetes foundation’.”

Carol Cramer was a mother on a mission. When her son Brian, a 2010 graduate, was diagnosed with Type 1 Diabetes at age three, Cramer had an idea that would change their family’s life and the lives of children all over the world.

When the then three-year-old Brian was diagnosed June 1, 1996, he could not quite understand what was going on. His whole life had just been altered, and there were few tools that could explain this sudden, serious change to his life.

“[The hospital] had given me a coloring book. The coloring book had a little boy named Sam, who also had diabetes. For some reason, in my mind, I knew then that I was going to do something because to me, a coloring book for a three-year-old boy was not enough,” Cramer, a one-on-one aide, said. “I knew then that I wanted to do something, but I didn’t know what.”

Fast forward a year to Brian’s fifth birthday. Cramer called the Juvenile Diabetes Research Foundation, or JDRF, that day. She took her son to the Chicago JDRF office so Brian could meet the people who were working for the cure.

“The director of the JDRF got down on her knees and I had never witnessed that before, a stranger, to address one of my children like a mom or dad would. That just had such a profound effect on me,” Cramer said. “She told Brian that ‘not a day will go by that we won’t be working to find that cure’ and that everybody at JDRF wanted Brian to have his birthday and to have fun, and [asked] if he would do that for them.”

More than Brian’s lifted spirits came out of that trip to the JDRF. Cramer also showed the director that day the teddy bear she made to help explain Diabetes to her young son when he was first diagnosed.

“[Two years before going to the JDRF] I simply woke up and knew that I was going to take a teddy bear and I was going to put patches on the teddy bear. All the places that are insulin injection sites are where the different colored patches are so that it could be understood the importance of rotating the insulin sites, so there’s not the scar tissue buildup and insulin resistance,” Cramer said. “Then I put little heart patches on the fingers to replicate the finger poking because that’s the heart of diabetes­­: understanding what your blood sugar is. Then I knew I wanted to put a medical identification bracelet on because these were all things that Brian was struggling with.”

Brian began taking the bear, whom Cramer called Rufus, everywhere he went. Cramer thought about the other young Diabetes patients who were also trying to manage life with this diagnosis, and asked the director of the JDRF if she could make a few more bears for other children who might want one.

“[After] I had no idea that she was going to go to the international level with it. She called me then and told me that she had showed Rufus at the international level [of the JDRF],” Cramer said. “I got in touch with them and the next thing I knew, I had an order for 10,000 bears. And I didn’t even have a manufacturer!”

Cramer got right to work. She borrowed $8,000 from her life insurance policy to manufacture the bears for those inside the United States, while she still made bears herself for orders on the international level.

For a year and a half, Cramer only slept four nights a week, and she spent the other three nights sewing patches on Rufus bears.

The late nights ended in February 1997 when the first manufactured bears by Russ Berrie & Company Inc. were delivered. Rufus, the Bear with Diabetes ®, took off from there.

“The book was not too far after the bear. It was Medic Alert who put me in contact with [author] Kim Gosselin. She just asked if she could write our story with a characterization of Brian, which came out in 1998,” Cramer said.

It was also that year that the Bag of Hope was first produced, a combination of tools for newly diagnosed children and their families, including a Rufus, the Bear with Diabetes® bear and Kim Gosselin’s book, Rufus Comes Home.

Cramer, an active member of the JDRF since 1996, and signed over the trademarks and copyright of Rufus, the Bear with Diabetes® on August 6, 2015. Even though she no longer completely controls Rufus, the Bear with Diabetes®, her message is still heard.

As Cramer writes in a note in Rufus Comes Home, “Rufus can offer a child a real symbol of comfort and security. It is my prayer for every child with diabetes to know they are loved for being who they are, just as a child loves a teddy bear for being a bear.”

A Student’s Perspective: Daniella Pombo

Q: How are you involved with the JDRF?
A: A lot of times are endocrinologists volunteer at JDRF camps or work for the organization , so I used to have a doctor who always tried to get me involved. I always wanted to be able to participate.

Q: How did you understand diabetes when you were first diagnosed?
A: I think it’s not exactly that the diabetic kids don’t understand what’s happening to them. You have to stay in the hospital for about a week when you’re diagnosed, it’s a requirement by every doctor. They take that week to educate you. Essentially, they go through this program so that you know exactly what to do if certain situations happen.  

Q: How do you live with your disease?
A: This isn’t a disease that affects me every once in awhile. It’s effects me right now. I’m monitored and have devices on me that are continually checking me and making sure that I’m ok. And it is a life threatening disease because I can die any minute. I can have a misjudgment and I can overdose myself or I can not see a sign or something could happen and I could be responsible for it and I wouldn’t even know.

Q: How does this disease affect your life?
A: A lot of people don’t understand that when you’re a teenager, your hormones are going through your body and are just screwing everything up. My dosages need to be changed every two months. And to change my doses, I miss a week of school. It affects my body so much.  They think that I’m kind of mooching off of [my disease] and that it’s easy, but that’s only because I make it look easy. They don’t understand that diabetes is something that affects your brain. When I’m not feeling well, I cannot see sometimes. I can’t think. My motor skills are gone and I have to sit down. Sometimes I can’t even walk. My body will get numb and I’ll have no idea what’s going on.

Q: When were you diagnosed?
A: I was diagnosed in January 5, 2010. I was 11. I had to use the restroom a lot and drink lots of water, and my teacher began to notice. I went to the doctor and they took a urine sample where they found sugar in the sample. I was pretty lucky because a lot of diabetics don’t know they are diabetic or notice the symptoms and they eventually figure it out when they’re in a coma.

Q: How did you react to your diagnosis?
A: I was really depressed when I got my diagnosis. It’s something that changes your life like a 180. When I had first gotten it I was in fifth grade and I was so self concious about it. I wanted to be a normal kid and it is something that makes you definitely not normal. I had to be conscious of everything that I was doing and everything I was eating.

Q: How did your family react to your diagnosis?
A: My mom was a wreck, she was in tears and trying to hold herself together, but it really is a life changing disease. It’s something that affects your day all the time. I miss so much stuff, and that’s why it’s a disease. It affects everything. So my mom felt so responsible and so  upset, but my siblings really took action to make sure they could accommodate if I wasn’t feeling well or needed to be able to help me through everyday activities so I could live a relatively normal life.