ENCINITAS − Parker and Madison Poston look like normal kids, flashing big toothy grins and talking about their hobbies; Parker, 11, loves building and engineering and wants to be a sniper when he grows up, and Madison, the social butterfly, loves art, “iCarly” and her friends.
It is only until they pull up their shirts to reveal the devices implanted in their abdomens that you realize that their lives are anything but normal.
The siblings suffer from Type 1 Diabetes, a blood-sugar disorder in which the pancreas produces little or no insulin. The disease has no cure.
But Parker and Madison have not let diabetes slow them down.
Thanks to a special medical device that allows their parents to continuously monitor their blood sugar levels, the brother and sister are not only surviving, but thriving despite their diagnosis.
They serve as juvenile ambassadors for awareness of the disease and have become role models for children and adults alike looking for ways to manage and live with the disease.
They help newly diagnosed kids learn to cope with the disease. They have their own blog. The family helps raise thousands of dollars for the Juvenile Diabetes Research Foundation.
“It has been stressful for me because I have my friends, my school plus diabetes,” said Parker, a fifth grader at La Costa Heights Elementary. “But because I have had it for a while, I feel like I can share my story and teach other people about diabetes.”
“They understand what I am feeling, and it makes me feel really happy inside,” Madison said when asked how she felt when she is able to tell people about her life and the disease. “Without diabetes, I wasn’t that type of kid.”
Jen Poston, their mother, said she is amazed at how her children have embraced this role in the Type 1 Diabetes community
“We have made it clear that it doesn’t define them, that they are a child first who has Type 1 Diabetes and that is so critically important,” Jen Poston said. “But being that voice has allowed them to be in the community and be in school and has given them the opportunity to educate … their peers.”
The family has also become passionate advocates of the Dexcom monitoring device, which continuously monitors their glucose levels and sends readings to their parents on their smartphones or watches via an app.
The device, Jen Poston said, allows Madison to play soccer or Parker to participate in parkour without the stress of worrying about sudden drops in their blood sugar.
“It has given them more freedom,” Jen Poston said. “It keeps us as parents much more on top of their blood sugars whereas before we were flying blind without knowing technically where they were.
“As long as they are under our house or until they are 18, they are wearing the Dexcom,” she said. “And I strongly believe a child diagnosed with Type 1 Diabetes should not leave the hospital without one.”
The device hasn’t been a panacea: replacing the sensor weekly requires sometimes painful needle pricks, and monitoring the blood sugar levels doesn’t mean they won’t drop, making sleepovers difficult.
And while they are able to do certain things, Jen Poston said it does require more planning and more caution than if they didn’t suffer from the disease.
“They don’t complain about Dexcom or their pump, but they have complained about being different, and it’s not really complaining as it is tears and sadness and mourning,” Jen Poston said. “Madison was too young to remember what life was like before her diagnosis, but Parker remembers.
“It is a lot of anxiety when it is time to change the machines…and it does hurt,” she said. “It is a very silent disease. People will come up to us and say, “Oh, your children look so good, they look healthy,” but little did they know about the five times they were up at night for blood checks, or their sensor failed, the tears and the crying. People don’t see any of that.”
Still, the brother and sister are able to live their lives and help other children and adults to understand the disease.
They are members of an ambassador program for the makers of the device called Dexcom Warriors, a community that includes singer Nick Jonas and San Diego Ninja Warrior Kyle Cochran, one of Parker’s favorite warriors.
But Jen Poston said having Parker and Madison as role models is critical for other kids newly diagnosed or struggling with their diagnosis.
“I think it is important for other kids to look at other kids,” mom said.
Jen said that community has been invaluable for her family too.
“My family has been very supportive, but they don’t get it,” she said. “Only another individual or family with Type 1 gets what you have been through. That is our tribe.”
But like many families who cope with the disease with their children, Jen said if she had one wish, it would be simple.
“Without hesitation, a cure,” she said. “And if there wasn’t a cure, I wish I could take it from them.”