Rufus isn’t the average fluffy teddy bear.
“He has diabetes, just like me,” said Lyla Jackson, Rufus’ 10-year-old owner. “He even has a diabetes bracelet, just like I do.”
And like Lyla, Rufus is all about raising awareness about Type 1 diabetes.
Monday through Wednesday, Lyla will be in Washington, D.C. as one of more than 160 children participating in the JDRF 2019 Children’s Congress, where she will be lobbying members of Congress to share her story of living with Type 1 diabetes and encourage continued funding for the Special Diabetes Program, among other issues.
Lyla, who lives in Lehi, was chosen to participate by JDRF, a nonprofit organization that advocates for patients with Type 1 diabetes and funds diabetes research.
Lyla was diagnosed eight years ago after her parents spotted symptoms.
“We noticed that she started drinking a lot and wetting through her diapers,” Sue Jackson, Lyla’s mother, said. “With my work in health, I knew those were signs for Type 1.”
In the years since, technology has helped her to become more independent. Lyla has a smartphone only used for diabetes purposes to get readings from her Dexcom glucose monitor on her arm. If levels get too high or low, the monitor sends an alarm to her and her parents’ phones.
“I am in meetings in Cambridge, England, when I check my phone and there is Lyla’s blood sugar even though I am 4,000 miles away,” said Greg Jackson, Lyla’s father.
Prior to that technology, her parents, who both teach at Utah Valley University in Orem, were afraid to leave her alone with a babysitter, at birthday parties or at a dance class.
“She was very much tethered to us,” Sue Jackson said.
It took three years after Lyla’s diagnosis for the Jackson’s insurance company to cover the cost of her Dexcom monitor. Lyla said that’s why it’s crucial for Congress to continue to fund the Special Diabetes Program.
Her diagnosis means that her body doesn’t produce insulin on its own. She needs more insulin in the summer, and her blood sugar levels don’t stay steady when she gets excited.
Lyla said that her insulin was $100 a vial when she was diagnosed eight years ago. It’s now $450 a vial. She plans to speak to Congress about the importance of insulin affordability.
“They are realizing they can make money off it, because if a diabetic doesn’t have it, they won’t live,” Lyla said.
She will also speak in support of allowing for patient choice in which products they use. Lyla said that insurance companies dictate which products patients with diabetes use, which can lead to the patient using a type of insulin or pump that isn’t the best fit for them.
“This is a hard enough disease to deal with on its own without insurance companies telling you which products you will or will not use,” Sue Jackson said.
Lyla uses a pump that doesn’t use tubing so that she can dance without tubes around her waist or up her arm, but it isn’t available on all insurance plans.
“For me, that would be a nightmare,” Lyla said.
It’s not Lyla’s first time presenting in public. In addition to explaining her diagnosis to her classroom, she’s also presented at a JDRF event and to the Lehi Police Department.
“She likes to get up in front of people,” Sue Jackson said. “She has presented about Type 1 most of her life in front of crowds, so this is not abnormal.”
The JDRF gave Lyla a packet with important things to remember about her trip. Lyla said she highlighted an entire paragraph of tips, except for the words “don’t be intimidated.” She didn’t need the reminder.
As Lyla’s personality has developed, her parents have learned she’s an outgoing and eloquent child.
“Two years ago, I don’t know if I would have thought, ‘oh, Lyla will become an advocate,’” Greg Jackson said. “I am surprised to see her taking on such a level of responsibility and trying to engage in a productive, meaningful change in the world.”
Lyla said she hates getting asked what’s on her arm or when people question what she can eat. Her parents said it’s not uncommon for people to get Type 1 — formerly known as juvenile diabetes — confused with Type 2 diabetes and to ask about Lyla’s diet, make comments about her weight or state that her diabetes would go away with diet and exercise.
Without insulin, she’d die within days.
“This isn’t a leg up you can limp on, the leg is gone and you’re bleeding out,” Greg Jackson said.
But even from the beginning, the Jacksons knew they didn’t want Lyla to grow up thinking she was a victim of her condition.
“My big thing is I don’t want people to feel pity for her because she’s a pincushion who gets poked all the time,” Sue Jackson said. “I would rather use the disease to advocate for change and to advocate for living a healthy life with the disease, as opposed to having a pity party.”