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A Life Of Constant Vigilance — Coping With Type 1 Diabetes

12-year-old Deven Rusnak and his family face sometimes hourly challenges dealing with his disease

Sherry Kriss-Dillane couldn't figure it out. Her usually good-natured 10-year-old son Deven was turning "nasty," subject to wild mood swings.

He sassed his mother and stepfather frequently. The boy was often tired, had headaches and stomachaches. He was always thirsty.

"He was just throwing words at me," she said. "He was very, very argumentative. The only word I can come up with is nasty. We had no idea what was wrong."

Kriss-Dillane suggested counseling. Deven refused.

"I'm not going, and you can't make me," he said.

When Kriss-Dillane asked him what was wrong, Deven burst into tears.

"I don't know, and I can't control it," he told his mother.

Things came to a head one night shortly before Christmas 2009. Kriss-Dillane was headed out to the store and Deven asked her to bring back some milk. Kriss-Dillane forgot the milk and instead returned with a half-gallon of orange juice. Deven had a fit. Then he drank the entire half-gallon of orange juice.

It wasn't much later that she heard her son in the bathroom.

"It sounded like a bucket of water," she recalled.

Five minutes later, Deven had to urinate again. And again.

"I asked him how long has this been going on?" she said.

"I don't know," he replied.

A life-changing phone call

She took him to his pediatrician the following day. Deven was so tired he had to lay in her lap. On Dec. 23 the doctor's office called. Deven needed bloodwork because he had sugar in his urine.

On Christmas Eve, Deven was at his father Chris Rusnak's house, happily building a slot car track. Kriss-Dillane was shopping when she got a call from her husband Frank Dillane. The pediatrician's office had called with the results of Deven's bloodwork.

"My husband said "You need to get him to Jersey Shore (Jersey Shore University Medical Center) now. He's already pre-registered."

By the time they arrived at Jersey Shore, Deven's blood glucose level was 328.

"The doctor said to us 'You guys are one of the lucky ones,' " Kriss-Dillane recalled. "Most children come in in the thousands."

When the doctor came in with the diagnosis of Type 1 diabetes, Deven began to cry, his mother said.

She still tears up when she remembers her son's response.

"He said, 'Mom, can you please take diabetes away? I promise I'll be good,' " she said.

Deven's diagnosis changed the family's life forever. It began a never-ending, nerve-wracking lifetime cycle of testing, calculating food intake, insulin pump and if needed, injections.

Deven, now 12, is a seventh-grader at Central Regional Middle School. He's on the school wrestling team in the 95-pound class. He tries to live as normal a life as possible.

Monitoring his illness

But normal for Deven is not normal for other children his age. His blood glucose level must be tested at least 10 to 12 times a day.

"That's on a good day," Kriss-Dillane said.

Kriss-Dillane and her husband Frank take turns checking Deven's blood glucose during the night to make sure it's not too high and not too low.

Just last week Kriss-Dillane had to bring him home from school because his blood sugar was fluctuating. He sat in the family's kitchen, eating sliced peaches and cheese sticks, chatting with his mother and a visitor.

"I didn't even know I was low," Deven said. "I was like really dizzy. I felt like I was going to throw up."

Ask him what it's like to have Type 1 diabetes and the boy doesn't mince words.

"It sucks," he said with a smile.

The daily routine

Deven has to wear an insulin pump that feeds insulin into his body every three hours to try and maintain readings of between 110 and 120. But even with the pump, his blood sugar levels fluctuate, either too high or too low.

If his blood sugar goes over 280, he has to have an injection. He carries his meter, shots and other materials in a camouflage emergency pack wherever he goes.

He says the worst part of the routine is changing his "site," the area on his body where the pump delivers the insulin.

Deven hikes up his shirt to show the quarter-size, neon-green disc on his left hip. The site comes with a needle that must be inserted into a fatty area on the body. Because Deven is so thin, he has no fat and the procedure is painful.

Everything he eats each day must be carefully checked for the number of carbohydrates he eats and charted.

"This is book 7," his mother says, holding up a notebook.

Thanks to Kriss-Dillane's efforts, school officials at both the Berkeley Township school district and Central Regional schools have developed diabetes awareness programs for the staff.

Deven even spoke at a meeting last fall thanking board members for their support.

Kriss-Dillane praised Vice Principal Joseph Firetto for making sure that the school staff, including teachers, bus drivers, custodians and cafeteria workers are trained to recognize if Deven is in trouble.

"This is a work in progress for me," Firetto said. "I wasn't too familiar with the disease and how to treat it."

Firetto credits Central school nurse Lynn Choate for helping Deven while he is in school.

"We make sure we treat Deven like any other student," he said. "We try not to draw undue attention to him, but we make sure his medical needs are met. He's pretty resilient. He's involved in wrestling. Basically nothing stops the kid."

Diabetes Awareness Dog

But Deven has hypoglycemic unawareness, which means he doesn't realize when his blood sugar is too low.

And Kriss-Dillane is on a mission to get her son a "Diabetes Awareness Dog" from Warren Retrievers, a Virginia-based kennel that trains Warren Retrievers to detect when a diabetes patients' blood sugar is too high or too low.

But a diabetes awareness dog is an expensive venture.

So Kriss-Dillane is setting up a series of events to raise the money for a DAD dog for Deven. The first is from 6 to 10 p.m. Jan. 21, at the Dillane home on 5 Timberline Road in Bayville. A medium will spend 20 minutes reading each participant, with 10-minute breaks in return. Refreshments will be served. Anyone who wants to attend can contact Kriss-Dillane at 732-674-5116, or by e-mail at diabetesmom2009@gmail.com.

Anyone who can't attend can still make donations for Deven's dog at www.GuardianAngelServiceDogs.org and donate under the name "the Dillane family."

Kriss-Dillane wants to make sure the essence of her son does not get lost in the complicated management of his disease.

"He's much more than the disease he has," she said. "That is a small part of him. It's not all of him."

Sherry Kriss-Dillane January 18, 2012 at 02:18 PM
If you don't have a child with Type 1 diabetes you can't understand, that is why I do the videos. It's a 24/7 disease you can't forget about it, if you do your child can go into DKA (Diabetic Ketoacidosis) and die if not treated, or die from Hypoglycemia. Just in July that we heard of on the D.O.C. 6 children died from Type 1. Nothing that their parents did wrong, it's just how the disease is. you never know. It's a constant vigilance day and night, setting alarms, pricking fingers to check their blood and weighing, messuring and calculating everything they eat or drink. I do have up Diabetes videos on you tube if you would like to take a look. I'm at Diabetesmom2009, please feel free. There is also HOPE FORE KAYLEA and that is Kaylea D..A.D. dog... Thank you for your comment. and like always..those who don't know first hand, I invite all to come and see what these children/family's days are like. But it has to be on a site change day, they are the worst. And that would be Friday after school or in the early evening. Again, thank you for your comment and I hope I answered some of your questions. You can also find me on face book under Sherry Kriss-Dillane.
R. Ray February 21, 2012 at 03:39 PM
Dear Mrs. Sherry Kriss-Dillane: My son Bob was about the same age as your son Deven when he developed Diabetes Type 1 and he too was what they called then a Brittle-Diabetic and many times did not recoginized when he was having a reaction and even now 40 years later, he sometimes has a reaction and my husband and I are always praying that our Lord will look after him when we are not around. Unless you live with this situation a lot of people don't understand it. "Thank God" Central Regional High & Middle School have people that care like Dr. P., Mr. Joe Firetto, Mr. Grossman,Mrs. Ramsey, Mr. D. Corbin and great nurses such as Mrs. Choate and the Board of Education. You and your family will most definitely be in our prayer book.
Sherry Dillane February 21, 2012 at 08:10 PM
Thank you R. Ray, I'm sorry to hear that. As we know from being "D" families, we know that bottom line of what can happen, and all to often does. Yes, Mr. Firetto has been amazing in all of this. He has worked hand and hand with me and my husband. Setting up meeting with not only teachers but coaches, counselor and nurse as well. To let me explain what Deven's signs and symptoms are and what can happen or what his signs and symptoms are. I also send Mr. Firetto videos, and information that he does read and watch..Yes, I am blessed, Deven is blessed to be in the school where someone is so understanding that they work with you for the safety of your child. I couldn't ask for more...Thank you R. Ray for your comment and good wishes and prayers!
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