Living with juvenile diabetes
Imagine how you would feel if you learned that your child has type 1 diabetes.
“You protect your child, you make sure nothing hurts your child, you have everything good for them and all of a sudden you’re giving them needles every day and you’re in the hospital,” says Cindy MacDonald.
Her son, Mitchell MacDonald, was diagnosed with juvenile diabetes when he was three years old.
“He didn’t understand. He kept saying, ‘Why are you hurting me, Mom?'”
Now 10, Mitchell remembers much more about life with diabetes than he does about what life was like before his diagnosis.
He wants people to know he’s a normal kid – he just has to take a few extra steps a day to keep his diabetes in check.
He has an insulin pump that helps him do this.
“I think when we’re asking them to check their sugars so many times a day, … a lot of times people think we’re overprotective parents,” says Cindy MacDonald. “But you (have to). You’re only one step away from something really good or something really bad happening.”
Having a child with type 1 diabetes means you always have to be prepared, whether you’re going out for the day or for a family vacation.
It involves constantly educating the people around you about what living with type 1 diabetes means.
Thirteen-year-old Emily Smith was diagnosed with type 1 diabetes when she was nine years old. Having diabetes has affected her life, she says, but it’s not as bad as she thought it would be.
“I take insulin everywhere. I have to count carbs and test sugars before everything,” she says.
It was hard in the beginning, but she’s used to doing what is required now.
“When she said it’s not as bad as she thought it would be, the reality is it’s a horrible disease,” says Todd Smith, Emily’s father.
“Emily has just been very mature about the whole thing right from the start. She’s just very accepting.”
She quickly realized this is what she has to do, and there is nothing she can do about it, he says.
“She’s very in touch with her body and she knows what she has to do to stay healthy. She’s just embraced it and she doesn’t feel sorry for herself,” he says. Diabetes is not an easy disease to deal with, says Todd Smith. It doesn’t go away and you don’t get a break from it.
“It becomes a lifestyle so you get accustomed to it,” he says.
Emily knows when her blood sugar is low or high, as her mood changes or she gets shaky.
“All my friends in the beginning thought you get it from having too much sugar,” she says, but that is a myth. “I think I’ve had to explain that at least 100 times to different people.”
According to the Canadian Diabetes Association, type 1 diabetes is a disease in which the pancreas does not produce insulin. If you have type 1 diabetes, glucose builds up in your blood instead of being used for energy.
The cause of type 1 diabetes remains unknown. However, it is not preventable, and it is not caused by eating too much sugar. The body’s defense system may attack insulin-making cells by mistake, but no one knows why.
People are usually diagnosed with type 1 diabetes before the age of 30, most often during childhood or their teens.
“(Emily) is completely insulin dependant. Her life depends on it, five needles every day,” says Todd Smith.
He invites people to do the math – five needs a day, seven days a week, 52 weeks a year. And that’s just insulin injections.
“It’s a life threatening illness. We are fortunate there are treatments but we have to be on top of it all of the time.”
Lori Cummings can relate to that. Her 13-year-old daughter Kelsie Cummings has juvenile diabetes. She was diagnosed two weeks shy of her sixth birthday.
“I live with my cell on whenever she’s not in the house or whenever I’m out,” says Lori Cummings. “I have to constantly be accessible for her.”
Having juvenile diabetes is hard, says Kelsie.
“Especially when we have parties or people bring in a snack. I have to test my blood sugars,” she says. “I also have to call my parents to see if I can have it.”
It’s an ongoing disease, says Kelsie, one that any age can get.
These days, her friends have a better understanding of what having type 1 diabetes means, but it was hard growing up.
“She didn’t get invited to sleepovers very often because parents were scared of dealing with it,” says Lori Cummings. “It’s a little bit easier now that she’s older.”
It also helps that Kelsie is on an insulin pump now rather than needles.
Mitchell, Emily and Kelsie are the 2010 youth ambassadors for the annual Telus Walk/Run to Cure Diabetes for the Juvenile Diabetes Research Foundation that is taking place Sunday, May 30, at Hazen Park in Oromocto.
They hope lots of people come out, says Kelsie, “because the more money we raise, the closer we are to a cure.”
The event helps to raise awareness and gives support to those who have juvenile diabetes, says Ed Hawkes, co-chair of the local Telus Walk/Run to Cure Diabetes for the Juvenile Diabetes Research Foundation.
“It’s also a celebration of all the effort that goes into the fundraising and knowing we’re putting a few more bricks in that wall that will be a cure.”
Registration begins at 9 a.m. on May 30, with the opening ceremonies at 11:30 a.m. and the 5K walk/run getting underway at noon. There will also be a 500-metre run for kids that day.
“For years, diabetes has been a growing thing, type 1 and type 2,” says Cindy MacDonald.
“Just the fact that it’s one of the diseases that is very close to finding a cure, all these walks in little communities and cities are getting people very close.”
She is confident that thanks to these fundraisers there will be a cure in their children’s lifetime.
“It’s one of the chronic conditions that a cure is in sight (for),” says Hawkes.
“What’s exciting about that is because it is autoimmune-related, they’re also anticipating that finding a cure to diabetes will unlock all of the autoimmune conditions, like rheumatoid arthritis, colitis, Crohn’s and all of those things.”
The other thing people need to be aware of, he says, is that sometimes there is a lack of urgency around diabetes because insulin is available to treat it.
“It’s not nearly the same because your body doesn’t provide it. You’re trying to get the dose right continually. It’s literally a seven/24 job. It’s not a cure and a mistake can be fatal.”
To learn more about the Telus Walk/Run to Cure Diabetes for the Juvenile Diabetes Research Foundation, visit http://www.jdrf.ca/walk or email .
Fast facts
What: The Telus Walk/Run to Cure Diabetes
Information: This annual 5K walk/run raises funds for the Juvenile Diabetes Research Foundation. It is being held on Sunday, May 30 at Hazen Park in Oromocto. Registration begins at 9 a.m., the opening ceremonies are at 11:30 a.m. and the walk/run gets underway at noon. There is also a 500-metre run for kids.
Contact: To learn more, visit http://www.jdrf.ca/walk or email