Type 1 Diabetes: Dane’s Story

Ever energetic, 9-year old Dane unexpectedly started feeling tired most of the time. He increasingly got headaches and felt nauseous, so he told his parents, Angela and Gary, he didn’t feel right. At a block party, he wasn’t able to make it to the top of a portable rock-climbing wall, something that ordinarily would have been easy for him. The next morning Angela found him curled up in a ball on the couch with a stomachache. Later that morning, he noticed bruises on his stomach, which didn’t make sense to him. He hadn’t fallen or been hit where the bruises appeared.

Angela called Dane’s pediatrician and described the bruises and other symptoms. He asked whether Dane had lost weight. Angela hadn’t noticed, but thought his face looked a little thinner. The pediatrician wanted to see Dane that day.

Diagnosed with diabetes

“He gave Dane a very thorough exam,” Angela remembers. “He saw nothing glaring to explain the symptoms.” He gave them a slip for blood work at a lab and had Dane do a urine dip test. When the nurse showed the doctor the results, he told them there was a change of plans. The test showed high levels of glucose in Dane’s urine, an indication of diabetes. He wanted them to go straight to the local hospital for further testing.

At the hospital, blood was drawn. Forty-five minutes later, when they were back at home, the doctor called with a diagnosis: Dane had Type 1 diabetes. The doctor told Angela she needed to take him to Children’s Hospital of Philadelphia (CHOP).

As they were getting ready to leave, Dane, crying, asked Angela if he was going to die. She told him, no, that he was in good hands and they were taking care of him. Then he asked, “Will it go away?” Angela explained that it wouldn’t, that it was something they would now have to deal with, probably for the rest of his life. “When he had those answers,” Angela remembers, “he sat with it for a little while, then said ‘OK, what do I need to do?’”

Treatment and training at CHOP

That night, they drove from their home in upper Bucks County to Philadelphia. “They knew we were coming,” says Angela. “They were ready to admit us through the ER. Everyone we dealt with was so kind and so great with Dane.” They spent time in the ER getting Dane stabilized. He was very dehydrated, so much so that it was hard to get an IV in a vein, and his blood sugar was very high.

“Everyone explained what they were doing, to me and to Dane,” Angela remembers. “That made it much easier than it might have been.” Dane was settled in a room, hydrated and with his blood sugar in a normal range. He was now under the care of CHOP’s Diabetes Center.

Dane spent the next few days at CHOP, both to make sure his blood sugar levels were under control and so he and his parents could be trained in how to manage his diabetes. They had three days of classes, with morning and afternoon sessions, in which they learned about the relationship between food and insulin, how to track Dane’s blood sugar level and how to administer insulin when that level got too high.

“They did such a good job with the training,” Gary says. “They broke it down into manageable units. It was still overwhelming, but by the time we were done we felt well-equipped. We had resources to refer back to and connections at CHOP – people to call if we had questions.”

The family appreciated the quality of the care Dane was receiving, along with the emotional support.

“They weren’t just friendly, they were helpful and so knowledgeable. It was a tough time for us, but they made it as good as it possibly could be.”

Taking charge of his own diabetes management

From the start, Dane was an active participant in managing his diabetes. He understood the importance of counting carbs and managing what he was eating. He learned how to read nutrition labels, judge serving sizes and understand how food affected his body. Within a year, he also took on the step of giving himself insulin injections.

Once Dane and his parents were well grounded in the mechanics and the science of managing his blood sugar levels, Dane started using an insulin pump. That made life much easier for him, and allowed him to have more flexibility with eating.

Dane had been involved in martial arts before his diagnosis, and with his diabetes under control he went back to it. He would unclip the pump during taekwondo class or before bouts at tournaments, and recognized how long he could go (about an hour) before he had to reattach it. He learned how to manage his blood sugar levels during these bursts of intense activity, eating food before and checking his readings periodically.

“Over the years, my knowledge has grown,” Dane says. “Now it’s so much a part of my routine that I don’t even think about it.”

“Nothing needs to change if you are determined.”

Dane continued with martial arts through high school and reached high levels in competition, winning lots of awards. Now 22 and spending a year teaching English in Taiwan, he is training in jiu-jitsu, though more for recreation than with the goal of returning to competition. “It’s like meditation for me,” he says.

His big passion, and his career focus, is acting. Through high school and college, he acted in and directed school productions, and he performed professionally in plays, musicals and films. He has a special love for Shakespeare, and has acted in several productions. In the summers, all through college, he performed with the Pennsylvania Shakespeare Company.

“The diabetes made me take a little hitch in my step,” Dane says.

“Then once I learned to walk again, I ran. Nothing needs to change if you are determined.”

Speaking with him, it’s clear that Dane is determined. We look forward to seeing where his drive and his acting talent take him.