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.”
Vernon Stout has always loved restoring cars, and he’s always had respect for the military. He visited several states and countries while his dad served in the Air Force, spending his teen years at the Ankara, Turkey Air Force Base.
Eleven years ago, Stout got his hands on a 1951 Dodge M37, or a “military power wagon.” After working to restore it for 100 days, he decided to take it out for a spin.
The very first drive he took, Stout said an 89-year-old man chased him down the street to ask for a ride. Stout said yes to the man, who hopped on the back wheel and into the bed of the truck to sit on the wheel well. Stout later learned the man was a veteran who served in the Korean War.
“He starts to tell me how the last time he had seen a truck like this was in the Korean War,” Stout said. “He was really emotional and telling me several of the stories.”
The experience stuck with Stout. Later, he would take the truck to different parades, where he had the opportunity to also talk to young people about his experiences having a dad in the Air Force, as well as hear the stories and memories of veterans.
Then one day, fellow military vehicle owner Wade Knapp suggested he and Stout start some sort of official organization that would continue to bring military vehicles to parades and the like.
Together, Stout and Knapp founded the Freedom Vehicles Association, which later became incorporated in the state of Utah as Tools of Freedom Inc., of which Stout serves as president. Knapp and Stout take their military vehicles to parks and schools, teaching students and young people about “freedom, patriotism and how to honor veterans,” Stout said.
For five years, the Freedom Vehicles Military Outpost has been part of Provo’s Freedom Festival. In addition to approximately 50 vehicles on display (Stout’s personal collection has grown to 30 vehicles in the last 11 years), Stout said they also have more than 25,000 artifacts such as medals and uniforms on display at the SCERA Park.
The outpost also features a “boot camp,” which children and teenagers can participate in, learning how to salute, army crawl, throw a grenade, stand at a attention and perform basic drills. This year also features a rope bridge.
Fifteen-year-old Abraham Olenslager moved to Orem just a few years ago, and he remembers driving by the park during the Freedom Festival and seeing the vehicles. He always had an interest in military history and was eager to participate in the boot camp — Stout said he did the boot camp seven times in one day. Now, Abraham is one of the volunteers running the boot camp.
“It’s just really fun to teach the younger kids and show them the history,” Abraham said. “So that we can respect those who served in the past and created that freedoms that we have now ... it’s just a good experience.”
It’s an experience Stout hopes to make more permanent, rather than a once-a-year event that only lasts a few days. Stout’s dream is to build a “Victory Park” with permanent displays of artifacts and vehicles and the continued opportunity to teach people about the sacrifices made for the freedom they enjoy.
Stout said they want the park to be within 15 miles of Orem and they’re actively looking for donors to either help donate land or money to buy a piece of land.
“As soon as we get enough money to build it, we have the stuff to build it,” Stout said. “I believe that people really enjoy it and it would be a good part of our community if we could figure out how to build the victory park.”
There’s no telling when the Victory Park will become a reality — but Stout’s passion to make it happen is evident, because of his passion for what it stands for.
“I do this event because I am passionate about freedom,” he said. “I think that if people don’t realize and understand the sacrifices that have been made, they’ll forget and that we may lose our freedom. I’m very, very passionate about making sure that we don’t lose our freedom.”
Learn more about Freedom Vehicles, Victory Park and how to volunteer or donate by visiting http://freedomvehicles.org/ or by contacting Stout at 801-427-7445.
Two people died after a suicide and accidental shooting in Payson Canyon early Saturday morning, according to police.
Ethan Larry Bertrum Timoko, 27, from Orem, apparently died from a self-inflicted gunshot wound to the head. The round from the gunshot then accidentally struck Nakylee Hope Marvin, 24, of Springville, in the neck. Marvin was critically injured and later died.
Officers responded to the report of a shooting in the area of Maple Bench Campground around 12:30 a.m. Saturday, according to a press release from the Utah County Sheriff’s Office. The press release states the caller told dispatchers a man and a woman had been arguing in the area for several hours before the caller heard the woman screaming and heard a gunshot.
Detectives investigating discovered that Timoko had been arguing with Marvin while seated in a vehicle. Marvin was outside the vehicle. While they were arguing, Timoko apparently used a handgun and shot himself in the head. According to the press release, investigators believe the gunshot round left the vehicle and struck Marvin in the neck, apparently by accident. Timoko’s injury was immediately fatal, while Marvin was critically injured. Medical responders were unable to save Marvin.
Timoko and Marvin were camping with another man, who made the 911 call, and two children, a 5-year-old girl and a 3-year-old girl. The press release states the 3-year-old is the daughter of Marvin and the man who called 911; the 5-year-old is the daughter of Timoko and Marvin.
Both the caller and the children were unharmed.
RIDGECREST, Calif. — Crews in California assessed damage to cracked and burned buildings, broken roads, leaking water and gas lines and other infrastructure Saturday after the largest earthquake the region has seen in nearly 20 years jolted a remote stretch of country from Sacramento to Mexico.
No fatalities or major injuries were reported after Friday night’s 7.1-magnitude earthquake, and officials said damage did not initially appear as bad as expected and fewer than 200 people were in shelters.
But forecast temperatures of around 100 degrees and warnings by seismologists that large aftershocks were expected to continue for days — if not weeks — prompted further precautions.
The California National Guard was sending 200 troops, logistical support and aircraft, said Maj. Gen. David Baldwin. The Pentagon had been notified, and the entire California Military Department was put on alert, he said.
The quake struck at 8:19 p.m. Friday and was centered 11 miles from Ridgecrest, the same area of the Mojave Desert where a 6.4-magnitude temblor hit just a day earlier.
April Hamlin, a Ridgecrest native, said she was “already on edge” when the second quake hit. She and her three kids initially thought it was another aftershock.
“But it just kept on intensifying,” she said. “The TV went over, hanging by the cord. We heard it break. We heard glass breakage in the other rooms, but all we could do was stay where we were until it stopped.”
Nearby Naval Air Weapons Station China Lake, the Navy’s largest single landholding, said in a Facebook post that nonessential workers were evacuated and operations were halted “until further notice.”
In San Bernardino County, Gov. Gavin Newsom declared a state of emergency amid “conditions of extreme peril to the safety of persons and property.”
The California Office of Emergency Services brought in cots, water and meals and set up cooling centers, Director Mark Ghilarducci said.
State highway officials shut down a 30-mile section of State Route 178 between Ridgecrest and the town of Trona southwest of Death Valley, due to a rockslide and severe cracking. California Department of Transportation spokeswoman Christine Knadler said crews worked through the night to patch the roadway, but it remained rough and uneven. A $3 million emergency contract had been approved for repairs, she said.
Ron Mikulaco, 51, and his nephew, 23-year-old Brad Fernandez, stood on 178 on Saturday looking at the cracks in the road. The pair drove from Huntington Beach, some 170 miles southwest of Ridgecrest. Mikulaco, an amateur geologist, wanted to show his nephew “the power of Mother Nature,” and they had the epicenter’s latitude and longitude coordinates ready.
“We put that in the GPS and we’ll get as close as we can,” Fernandez said.
In Ridgecrest, local fire and police officials said they were initially swamped by calls for medical and ambulance service. But Police Chief Jed McLaughlin said there was “nothing but minor injuries such as cuts and bruises, by the grace of God.”
Two building fires — one involving a mobile home — were quickly doused, McLaughlin said, and natural gas lines where leaks were reported were shut off.
The light damage was largely due to the remoteness of the area where the tremblor occurred. Only 28,000 people live in the Ridgecrest area, which is sandwiched between Southern California, with a population of 24 million, and Las Vegas’ Clark County, with 2.2 million.
Ridgecrest Mayor Peggy Breeden said some “bad people” came into the community after the quake and tried to steal items from local businesses. McLaughlin said one business was burglarized, with “a very expensive piece of equipment stolen.”
Trona, with about 2,000 residents, was reported to have at least one collapsed building. Roads were buckled or blocked, and police put out a call for bottled water for residents.
Antoun Abdullatif, 59, owns liquor stores and other businesses in Ridgecrest and Trona.
“I would say 70% of my inventory is on the floor, broken,” he said Saturday morning in Ridgecrest. “Every time you sweep and you put stuff in the dust bin, you’re putting $200 in the trash.”
But he has stopped cleaning up, believing another earthquake is on the way.
“We are waiting but I hope it doesn’t come,” he said.
There is about a 1-in-10 chance that another 7.0 quake could hit within the next week, according to Lucy Jones, a seismologist at the California Institute of Technology and a former science adviser at the U.S. Geological Survey. The chance of a 5.0-magnitude quake “is approaching certainty,” she added.
She said the new quake probably ruptured along about 25 miles of fault line and was part of a continuing sequence. The seismic activity is unlikely to affect fault lines outside of the area, Jones said, noting that the gigantic San Andreas Fault is far away.
In Los Angeles, 150 miles away, the second quake rattled Dodger Stadium in the fourth inning of the team’s game against the San Diego Padres. But the game went on, and the Padres won, 3-2.
“Not many people can say they threw a strike during an earthquake,” Eric Lauer, who was on the mound at the time, said later. “My ball, my pitch, started an earthquake.”
“Everyone was jumping over us to leave,” said Daniel Earle, 52, of Playa del Rey, who was sitting with his wife in the stadium’s reserve level. “My wife was holding us, like squeezing. I’m surprised my arm is still here.”