Camryn’s journey: Type 1 diabetes isn’t slowing this sixth-grader down
Camryn McCullough, 11, is one of only two Utah kids chosen as delegates to the 2015 Children's Congress of the Juvenile Diabetes Research Foundation. McCullough seen here at her Kaysville home on Thursday, June 18, 2015, enjoys a variety of outdoor activities including dancing, skiing and roller skating.
Camryn McCullough checks her blood sugar up to eight times a day to ensure she's maintaining a safe level. McCullough seen here at her Kaysville home on Thursday, June 18, 2015.
KAYSVILLE — The face of Type 1 diabetes is the face of Camryn McCullough.
This on-the-go 11-year-old can tell you about using an insulin pump as easily as she tells you about her favorite subjects — reading, writing and science — at school.
A dancer, water skier and runner, Camryn lives the busy life of a soon-to-be sixth-grader all while managing a disease she was just diagnosed with last summer.
And soon, she will share her experiences with 160 other young people as one of Utah’s two delegates to the Children’s Congress of the Juvenile Diabetes Research Foundation in Washington D.C.
“I am excited to be with lots of other people who are like me,” Camryn says during a recent interview at her Kaysville home.
Plus, she adds, “I want to hear their stories and how they deal with it.”
For Camryn, dealing with Type 1 diabetes means testing her blood glucose level eight or nine times a day and using a pump that injects insulin through a catheter placed under her skin.
In Washington D.C., Camryn and her fellow delegates will meet with their United States senators and representatives to help raise awareness of the need for funding diabetes research.
That research could lead to better treatment for or prevention of Type 1 diabetes, says Camryn’s father Scott McCullough, who will accompany his daughter on the July 13-15 trip.
Or it might even lead to a cure one day –something for which 11-year-old Camryn is optimistic.
“By the time I’m married and have kids, I think they’ll have a cure,” she says.
Being open
Camryn was selected to attend the Children’s Congress from about 60 applicants in Utah and Idaho, says Mike Somers, executive director of the Utah-Idaho Chapter of the Juvenile Diabetes Research Foundation in Salt Lake City.
She and Emily Libal, 10, of Sandy, will tell their stories of living with Type 1 diabetes to a congressional committee and to members of Utah’s congressional delegation.
“(They) help put a face on Type 1 diabetes and let them know how it affects them on a daily basis,” Somers says. He adds, “It’s a neat experience to go back and tell your story, because every Type 1 story is very personal.”
Talking about her diabetes is a matter of course for Camryn, who says she is open about her condition with her friends at school and church.
She says she wanted to attend the Children’s Congress because “I just thought I should, to represent lots of other people who have this disease.”
Before Camryn was diagnosed in July of 2014, she says she had many of the classic symptoms of Type 1 diabetes.
“I was drinking a lot; I was going to the bathroom a lot,” the student at Burton Elementary School in Kaysville says. She was also waking up at night with bad cramps in her legs.
Her parents were alert to the symptoms because eight years ago, Camryn’s sister Katherine, 15, was also diagnosed with Type 1 diabetes. The chance that two siblings would both develop the autoimmune disease is only about 4 percent, Stephanie McCullough, the girls’ mother, says.
A shared bond
Dealing with her disease was hard at first, Camryn admits.
“For the first couple of months, I was always sad and I would have little breakdowns and little breakdowns,” she says.
But her big sister Katherine has helped her to adjust to the lifestyle changes of diabetes, she says, like learning how to test her blood.
In the beginning, she explains, with tears filling her eyes, “Every time I’d prick my finger, she’d prick hers too.”
Katherine, a former delegate to Children’s Congress, says it was difficult to accept that her little sister — nicknamed Soobie — would have to live with Type 1 too.
“It was just hard because I knew all the stuff she had to go through and it wasn’t fair,” she says.
Educating others about Type 1 diabetes is a priority for Camryn’s family since they have discovered many folks have misconceptions about the disease.
At school, for example, Camryn and Katherine did a presentation for the students to explain what Type 1 diabetes is and the things they must do to manage it. They also talk about Type 1 at various community events planned by the Utah-Idaho chapter of the Juvenile Diabetes Research Foundation.
“The biggest thing is they can help each other when it’s hard,” Scott McCullough says. As parents, he says he and Stephanie don’t fully understand what it’s like to live with the condition, but, “Having a sister who knows how hard it is, how it sucks — that’s a different kind of hug.”
No slowing down
Only 5 percent of the 21 million Americans with diabetes have Type 1, according to the Juvenile Diabetes Research Foundation. Most people are more familiar with Type 2 diabetes, which is linked to being overweight, not eating properly and not getting enough exercise.
Type 1 diabetes — once known as juvenile diabetes — can occur at any age and is an autoimmune disease in which the body’s immune system attacks and kills insulin-producing cells in the pancreas.
“There’s nothing that anyone did or anyone can do (to prevent it),” Somers says, adding that those with the disease will be insulin-dependent for the rest of their lives.
And insulin is not a cure, he says, but a life support measure. Without it, a person with Type 1 diabetes will die.
Katherine says she often has to explain to others that she didn’t get Type 1 diabetes because of her eating or exercise habits.
And, Camryn, adds, “I didn’t get it from eating too much sugar. It was just something that happened to my body.”
Somers says Camryn has vowed to keep a positive attitude about her diabetes and not let it slow her down or change her life.
The Kaysville sixth-grader has had the unique perspective of watching her sister deal with the condition for years, he says. What stands out about Camryn is “her resilience and her strength to know exactly what she’s getting into — a lot of Type 1’s don’t understand it,” Somers says.
’Brave’ fight
The JDRF Children’s Congress is held every other year, in part, to allow young people to thank senators and representatives for approving funding for diabetes research, Somers says.
Scott, a former member of the board of directors for the Utah chapter, says it’s an impressive sight to see the 160 kids walking up the steps of the United States Capitol.
For Camryn, attending the gathering is important because “you get to raise awareness for what happened to you.”
Scott says he is proud of Camryn and Katherine for the way they deal with Type 1 diabetes. Sometimes, as kids get older, they may try to hide their disease so they they don’t seem different than their peers, he says, but he hopes that won’t ever happen with his daughters.
“I want my girls to be brave enough to stand up and talk about it,” he says.
Type 1 affects the whole family, which also includes children Maggie, 17, and Trevor, 13, Stephanie adds, It’s a factor in any plans or decisions the family makes, she says; even after family prayers, it’s “you two go brush your teeth –you two go test your blood.”
But the Kaysville mother also says, “We always have this motto at our house that everybody has their crap. You just deal with it — and get on with life.”
Contact reporter Becky Cairns at 801-625-4276 or bcairns@standard.net. Follow her on Twitter at @bccairns or like her on Facebook at www.facebook.com/SEbeckycairns.