Lehi Girl Presses Congress for Juvenile Diabetes Research

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LEHI, Utah (AP) – Rufus is not an ordinary teddy bear.

"He's diabetic, just like me," said Lyla Jackson, the 10-year-old owner of Rufus. "He even has a bracelet for diabetes just like me."

And like Lyla, Rufus's main goal is to raise awareness about type 1 diabetes.

From July 8 to 10, Lyla was in Washington, DC among the more than 160 children participating in the JDRF 2019 Children's Congress, where she lobbied Congress members to tell their personal experience. Type 1 diabetes and encouraged ongoing funding for the Special Diabetes Program, among others.

Lyla, who lives in Lehi, was chosen by JDRF, a non-profit organization that advocates for patients with type 1 diabetes and funds diabetes research.

Lyla was diagnosed eight years ago after her parents had detected symptoms.

"We noticed that she had started drinking a lot and wet her diapers," said Sue Jackson, Lyla's mother. "With my work in the health field, I knew they were type 1 signs."

Since then, technology has helped it become more independent. Lyla has a smartphone only used for diabetes purposes to get readings from her Dexcom blood glucose meter on her arm. If the levels get too high or too low, the monitor sends an alarm to their phones and those of their parents.

"I'm in a meeting in Cambridge, England, when I check my phone and Lyla's blood sugar is good, even though I'm 4,000 miles away," said Greg Jackson, father of Lyla.

Prior to this technology, her parents, who both teach at Utah Valley University in Orem, were worried about leaving her alone with a babysitter, at a birthday party, or at a dance class.

"She was very attached to us," said Sue Jackson.

Three years after Lyla's diagnosis with the Jackson insurance company, the cost of his Dexcom monitor was taken care of. Lyla said that is why it is crucial that Congress continues to fund the special diabetes treatment program.

His diagnosis means that his body does not produce insulin by itself. She needs more insulin in the summer and her blood sugar level does not stay stable when she is excited.

Lyla said her insulin cost $ 100 per vial when she was diagnosed eight years ago. It's now $ 450 a jar. She plans to talk to Congress about the importance of insulin affordability.

"They realize that they can make money, because if a diabetic does not, they will not live," Lyla said.

It's a pretty difficult disease to deal with alone without the insurance companies telling you which products you will use or not.

-Sue Jackson

She also advocated allowing patients to choose the products they use. According to Lyla, insurance companies dictate the products to be used by diabetic patients, which can lead them to use a type of insulin or a pump that does not suit them.

"It's a pretty tough disease to deal with alone without the insurance companies telling you what products you're going to use or not," Sue Jackson said.

Lyla uses a pump that does not use a tube so she can dance without a tube around her waist or arm, but she is not available in all plans.

"For me it would be a nightmare," said Lyla.

This was not the first time Lyla was in public. In addition to explaining her diagnosis to her class, she was also featured at a JDRF event and at the Lehi Police Department.

"She likes to stand up to people," said Sue Jackson. "She has introduced Type 1 almost all her life in front of the crowd, so it's not abnormal."

JDRF provided Lyla with a package containing important elements to remember from her trip. Lyla said that she had highlighted an entire paragraph of advice, with the exception of the words "do not be intimidated". She did not need a reminder.

As Lyla's personality developed, her parents learned that she was an extroverted and eloquent child.

"Two years ago, I do not know if I would have thought," Oh, Lyla will become a lawyer, "said Greg Jackson." I'm surprised to see her assume such a level of responsibility and try to To engage in productive and meaningful change in the world. "

Lyla said that she hates being asked what is on her arm or when people are wondering what she can eat. Her parents explained that it was not uncommon for people to develop type 2 diabetes – formerly known as juvenile diabetes – and asked her questions about Lyla's diet, commented on her weight, or said her Diabetes would disappear with diet and exercise.

Without insulin, she would die in a few days.

"It's not a leg on which you can limp, your leg is gone and you're bleeding," Greg Jackson said.

But even from the beginning, the Jackson knew that they did not want Lyla to grow up thinking that she was a victim of her illness.

"My big problem is that I do not want people to feel pity for it because it's a pelota that gets pummeled all the time," Sue Jackson said. "I would rather use the disease to advocate for change and to advocate for a healthy life with the disease, rather than having a pity party."

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