Middle schooler in D.C. to advocate for type 1 diabetes

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Las Cruces middle school student Lila Sanchez is making her first trip to Washington, D.C., where she and other children from across the country are advocating for more diabetes research and lower insulin prices.

Lila, 13, has been a type 1 diabetic (T1D) since she was 8. T1D is a lifelong autoimmune condition that requires insulin injections to regulate blood sugar.

With love and support from her parents, Las Cruces Public Schools Board of Education President Teresa Tenorio and Doña Ana County Commissioner Manuel Sanchez, Lila has learned to manage her condition with a positive attitude, and to advocate for herself and others.

In the nation’s capital, she will be the only New Mexico representative among 165 students from across the country at the Junior Diabetes Research Foundation’s (JDRF) Children’s Congress. During the July 7-9 event, Lila and her mother will visit the offices of U.S. Sens. Martin Heinrich and Ben Ray Lujan and U.S. Rep. Gabe Vasquez to raise awareness about T1D and support JDRF’s goal of a T1D-free world.

For Lila, and for kids and adults like her, diabetes means constantly monitoring blood sugar levels and keeping track of her carbohydrate intake to make sure they are not too high or too low. She wears an insulin pump that uses a plastic needle to inject insulin into her bloodstream. Lila also wears a continuous glucose monitor that is also inserted under the skin and tracks her blood sugar levels, which are automatically sent to Lila’s and her parents’ cell phones.

“I do believe a cure will be possible,” said Lila, who will be an eighth grader at Picacho Middle School (PMS) when the 2023-24 school year begins. She likes to play basketball and softball and wants to try out for the Scorpions teams at PMS this year.

Since Lila’s was diagnosed with T1D five years ago, her parents have helped her to “not associate negativity” with her illness, Tenorio said. “It’s never ‘why me?’” she said. “This could happen to anybody.”

At the same time, “it’s okay to vent,” Tenorio said, as Lila deals with the demands and frustrations of being an active adolescent with T1D.

“I don’t feel highs as much as I feel lows (too much insulin),” Lila said.

They can leave her with less energy than normal and feeling shaky.

Lila’s condition means she and her family must deal with “a lot of things people take for granted,” Tenorio said, like making sure Lila’s insulin pump and monitor are working properly, that she has all the medical supplies she needs at home and wherever she goes, and she always has snacks on hand in case her blood sugar drops.

Last fall break, during a family trip to the Grand Canyon, Lila’s insulin pump stopped working. She was hours away from a replacement, so her parents began making phone calls until a replacement pump could be purchased. In the meantime, Lila went back to making multiple injections of insulin a day to stay healthy and alive.

Needles are a necessary part of T1D, including the needles that are part of insulin pumps, the .16-.24-inch needles in the syringes a T1D patient uses instead of a pump and to prick a finger to test blood sugar levels, and the filament inserted under the skin for a continuous glucose monitor. They are also part of emergency glucagon shots that school nurses keep on hand – and must be trained to use – in case of an emergency. A new glucagon nasal spray is replacing these shots because of the ease of use and reduced user error, Tenorio said.

If Lila or one of the other 60 or so Las Cruces Public Schools students who have TD1 go on a field trip, for example, at least one adult on that trip must be specifically trained to assist T1D students, Tenorio said. Per New Mexico Senate Bill 48, a minimum of two employees at every school must have that training, she said.

“In addition to school nurses, LCPS strives for educators and activities sponsors to be trained and that training is currently being updated and improved,” said Tenorio, who was elected to the LCPS Board of Education in 2019 and became board president earlier this year.

School nurses track their T1D students by computer and can take them juice or another snack if blood sugar levels drop, Tenorio said.

“Our nurses do a great job,” she said.

T1D equipment is also expensive. An insulin pump lasts about four years, Tenorio said, and costs about $4,000. With their insurance, Sanchez and Tenorio pay $800 out of pocket. Lila’s family pays about $300 a month for insulin and the other T1D supplies she needs.

Lila joined JDRF a couple of years ago after she and Tenorio participated in a diabetes walk in Albuquerque.

“I enjoy talking about it,” Lila said about her T1D condition.

The question she is most often asked is, “’Can you eat this?’” Lila said.

“I can eat pretty much anything as long as I dose for it,” she said.

“Manny (Lila’s father), Lila and I have memorized foods – how many carbs they have,” Tenorio said, and how that will affect Lila’s blood sugar and insulin levels.

“She owns that narrative of what it means to live with this,” Tenorio said.

Dealing with T1D sometimes “gets me down,” Lila said, especially dealing with needles. But, most of the time she feels well and enjoys her life. Lila’s goal is to become a mechanical engineer and work for NASA.