Working for a cure: Local boy to advocate for diabetes research in D.C.

Lucas Lye is like many 12-year-old boys. He goes to school, plays Little League baseball and enjoys spending time with family and friends.

Unlike many his age, however, he's lived with type 1 diabetes since the age of 4.

In the span of a day, the Naples Christian Academy student can go from having all the energy in the world to feeling nauseous and lightheaded as a result of the autoimmune disease.  

With type 1 diabetes, the body can't produce insulin — a hormone that the body needs to get glucose from the bloodstream into its cells, according to the American Diabetes Association. 

"Everyone needs insulin to live and get energy," Lucas said inside his East Naples home Tuesday.

He relies on modern technology to get the insulin he needs and manage his blood sugar levels. 

Lucas wears two life-saving devices all hours of the day.

The Omnipod System is a small pump placed near his navel that he programs to give him insulin. In order to monitor his glucose levels, he wears a small device on his back called the Dexcom continuous glucose monitoring system.

"Some people think that if you have an (insulin) pump and you have diabetes you're OK, but you're not," Lucas said. "You still have to prick your fingers and check your blood sugar seven times a day. It's a lot to handle."

But he doesn't let the disease weigh him down. In fact, he's using his circumstance to raise awareness and find a cure for type 1 diabetes. 

Lucas is representing Florida as a child delegate at the JDRF 2017 Children's Congress in Washington, D.C., between July 24 and 26. 

According to a press release from JDRF — a global organization funding type 1 diabetes research — more than 100 children delegates, between the ages of 4 to 17, are advocating for type 1 diabetes research and funding in front of members of Congress. 

"We need to ask for funding because we are really far from the cure," Lucas said.

Symptoms of type 1 diabetes include mood swings, excessive thirst and weight loss.

Lucas' parents, Lisa and Mark Lye, quickly recognized the symptoms. 

Mark Lye, 64, a retired professional golfer, was diagnosed with type 1 diabetes when he was 15. 

"I just knew what he had in front of him. It's a massive undertaking," Mark Lye said. 

He helps his son manage the disease, but can only do so much. He said type 1 diabetes affects individuals differently with age. 

"When you're younger you're still growing and your hormones are growing so the dosages of insulin change and your blood sugar is off and not as stable," Mark Lye said.

"You need more insulin as you get older," Lucas added. 

Lucas' parents constantly monitor his blood sugar levels. The glucose monitor he wears on his back transmits information to a mobile app on his parents' cell phones.

Their phones sound off an alarm anytime Lucas' blood sugar hits a high or low number.

Almost on a daily basis, Lucas said he goes into insulin shock. That means too much insulin is in his blood and can lead to having too little glucose, causing the body to shut down.

"Every day we have a low. The most dangerous time is at night when he's sleeping. It's our job to stay on top of those nighttime hours," Lisa Lye said. 

Type 1 diabetes affects children and young adults and makes up 5 percent of diabetes sufferers, according to the American Diabetes Association. 

One in 500 people nationwide have type 1 diabetes, according to Pamela Schmidt-Alagel, development manager of JDRF Florida's suncoast chapter in Naples. 

The chapter spans from Marco Island to Fort Myers. 

Lucas (@thelucascup) * Instagram photos and videos

Schmidt-Alagel said they provide support and services to families like the Lye's. 

"There are a lot of families out there just dealing with it alone," she added. 

She reached out to JDRF herself when her son was diagnosed with type 1 diabetes eight years ago. 

"They were there. I had no idea what type 1 diabetes was. For the families of newly diagnosed type 1's, it is an overwhelming diagnosis," Schmidt-Alagel added. 

Lucas and his family joined the local chapter not long after he received his diagnosis.

"We did it for his sake, so he could be around other kids with the disease so he doesn't feel like he's the only one at his school or church," Lisa Lye said.  

They've participated in many JDRF fundraisers, including its annual walk in December.

On their own, the family has hosted "Lucas Cup" pro-am golf tournaments raising millions of dollars for JDRF.

This is the first time Lucas is speaking out about diabetes in Washington, D.C.

“These children and their parents face the burden of type 1 diabetes every day, and by sharing their stories, they become the most powerful advocates we have in fighting type 1 diabetes. They represent millions of other families like mine who need the support of the government to help us end this disease,” Derek Rapp, JDRF president and CEO, said in a press release. “Children’s Congress gives the type 1 diabetes community a unified voice in front of Congress and a way to urge our government leaders to continue supporting research.”

In the weeks leading up to the conference, Lucas has raised awareness by documenting his life via social media and creating a scrapbook to present to members of Congress.

Lucas and his family, including his 10-year-old sister Eva, plan to support him in D.C. Only his father will be able to join him inside the conference. 

JDRF Children's Congress - JDRF Children's Congress

Eva, who also attends Naples Christian Academy, said she's proud of her older brother. Anytime her brother is feeling down, she said, "I always try to keep him encouraged and build him up." 

"They're a great little team," Mark Lye added.

Lucas said he can't wait to visit the nation's capital and make a difference in the lives of people just like him.