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'She's indestructible': Nebraska family helps spread awareness of daughter's rare disease

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A Lee Enterprises, Incorporated newspaper. Majority shareholder: David Hoffmann, Hoffmann Media Group.

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'She's indestructible': Nebraska family helps spread awareness of daughter's rare disease

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'She's indestructible': Nebraska family helps spread awareness of daughter's rare disease

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VALPARIASO — Her eyes grew distant. Her soft voice was slurred and broken as tears threatened to fall down her cheeks.

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@teswolfe She was dead set she was not having a seizure and was so upset at me for saying she was #dravetsyndrome #dravetsyndromeawareness ♬ original sound - Tes Wolfe

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6-year-old Gracie Wolfe and her mother, Tes Wolfe, sit on a couch at their home in Valparaiso. Tes Wolfe has documented her daughter's battle with Dravet syndrome on TikTok.

ARTHUR H. TRICKETT-WILE, Journal Star

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6-year-old Gracie Wolfe pokes at her iPad on the couch as her 1-year-old cat, Bean, naps beside her on Thursday at her family's home in Valparaiso. Gracie has Dravet syndrome, a rare and severe form of epilepsy, and routinely experiences seizures.

ARTHUR H. TRICKETT-WILE, Journal Star

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Tes Wolfe displays a seizure alarm voicemail she received earlier this month from an app installed on her daughter Gracie's Apple Watch on Thursday at their home in Valparaiso. 

ARTHUR H. TRICKETT-WILE, Journal Star

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@teswolfe I share this to show types of seizures because I had no idea they could look like this! These focal awareness seizures are new to us and her triggers changed as well. It’s so informative!! #dravetsyndrome #dravetsyndromeawareness ♬ original sound - Tes Wolfe

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Jamison Wolfe pets Addie, his daughter's seizure-alert dog, on Thursday at the Wolfe family home in Valparaiso.

ARTHUR H. TRICKETT-WILE, Journal Star

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6-year-old Gracie Wolfe plays on the trampoline with her seizure dog, Addie —a 3-year-old golden retriever — on Thursday at her family's home in Valparaiso. Gracie has Dravet syndrome, a rare and severe form of epilepsy, and routinely experiences seizures.

ARTHUR H. TRICKETT-WILE, Journal Star

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Top Journal Star photos and videos for September 2025

Monarch butterflies stop to feed on pollen and nectar from bushes of flowers along the Billy Wolff Trail on Monday, Sept. 22, 2025, in Lincoln. At the end of the summer months, a super generation of monarchs that has an extended life span emerge and prepare for their annual migration. Typically, as the weather begins to cool, the butterflies will begin their migration south. Those east of the Rocky Mountains migrate south to overwinter in the forests of central Mexico, while those from west of the Rockies fly to coastal California.

KENNETH FERRIERA,Journal Star

Nebraska quarterback Dylan Raiola (15) walks off the field after the Huskers loss to Michigan on Saturday.

ARTHUR H. TRICKETT-WILE, Journal Star

Charlie DeMoss touches up a painting during the Art in the Garden event at the Sunken Gardens on Saturday.

KENNETH FERRIERA, Journal Star

Runners, led by Pius X's Joe Majerus (552) and David Krier (549) take off from the starting line in the boy's varsity 5,000 meter race during Harold Scott Invitational at Pioneers Park on Thursday, Sept. 18, 2025, in Lincoln.

KENNETH FERRIERA,Journal Star

Nebraska head coach Matt Rhule reacts after a Michigan touchdown on Saturday. The Huskers fell to 3-1 this season with the 30-27 loss.

KENNETH FERRIERA, Journal Star

A cyclist rides across a bridge on the Helen Boosalis Trail over Nebraska Parkway near the intersection with South 27th Street on Wednesday, Sept. 24, 2025 in Lincoln.

ARTHUR H. TRICKETT-WILE,Journal Star

Nebraska's Dasan McCullough (15) celebrates with his teammates after sacking Michigan quarterback Bryce Underwood, not pictured, during the first half on Saturday, Sept. 20, 2024, at Memorial Stadium.

KENNETH FERRIERA,Journal Star

The Lincoln East Spartans student fan section roars on Sept. 19, 2025, at Seacrest Field.

ARTHUR H. TRICKETT-WILE, Journal Star file photo

Former Nebraska volleyball coach John Cook reacts as he sees a statue of himself for the first time during a statue dedication ceremony at the Devaney Sports Center on Thursday, Sept. 18, 2025, in Lincoln.

KENNETH FERRIERA, Journal Star

6-year-old Gracie Wolfe plays on the trampoline with her seizure dog, Addie —a 3-year-old golden retriever — on Thursday at her family's home in Valparaiso. Gracie has Dravet syndrome, a rare and severe form of epilepsy, and routinely experiences seizures.

ARTHUR H. TRICKETT-WILE, Journal Star

Nebraska’s Bergen Reilly (2) and Rebekah Allick (5) go for a block against Michigan’s Jenna Hanes (12) as Nebraska hosts Michigan on Wednesday, Sept. 24, 2025 at the Bob Devaney Sports Center in Lincoln.

ARTHUR H. TRICKETT-WILE,Journal Star

Nebraska's Williams Nwaneri (96) Vincent Shavers (9, behind, not visible) and DeShon Singleton (8) tackle Michigan quarterback Bryce Underwood (19) on Saturday at Memorial Stadium.

ARTHUR H. TRICKETT-WILE, Journal Star

University of Nebraska-Lincoln sophomores Bethany Fox, second from left, and Brayden Ebbers, third from left, attend a vigil for Charlie Kirk on Wednesday outside the Nebraska Union. “Charlie was such a light in this world,” Fox said. “He was such a phenomenal role model, and I hope that everybody can remember him for his courage.”

ARTHUR H. TRICKETT-WILE, Journal Star

Crete Fire and Rescue firefighter and UNL senior Landon Chao kneels on the ground to rest after climbing the steps of the west stadium for over an hour during the annual 9/11 memorial stair climb at Memorial Stadium on Thursday, Sept. 11, 2025, in Lincoln. "Every time I stop to kneel, I think of the men and woman who lost their life that day," Chao said.

KENNETH FERRIERA,Journal Star

Nebraska’s Andi Jackson (15) hits against Creighton’s Eloise Brandewie (10) and Creighton’s Jaya Johnson (6) on Tuesday, Sept. 16, 2025, as Creighton hosts Nebraska at CHI Health Center in Omaha.

ARTHUR H. TRICKETT-WILE,Journal Star

Nebraska quarterback Dylan Raiola (15) leads the Husker players out of the tunnel before tking on Houston Christian on Saturday, Sep. 13, 2024, at Memorial Stadium.

KENNETH FERRIERA,Journal Star

Chicago-based artist Matthew Mederer negotiates his scaffolding as he paints a mural featuring Lincoln-area buildings Wednesday at The Flats at Leighton District apartment complex. Mederer was one of three artists set to work on murals in the University Place neighborhood this week ahead of the Emerge LNK mural and street art festival, which is Sunday from 10 a.m. to 3 p.m. outside the LUX Center for the Arts, 2601 N. 48th St. The festival, started in 2021 in an effort to revive University Place, will feature live music, food trucks, a makers market, art activities and more.

ARTHUR H. TRICKETT-WILE, Journal Star

10-year-old Zayne Johnson of Lincoln uses an elliptical Thursday at the Fitblock outdoor gym at Tierra Park. The new gym features a system of exercise stations designed for people of all levels of experience and is wheelchair accessible.

ARTHUR H. TRICKETT-WILE, Journal Star

Jim Spence and his grandson Cam, 3, practice putting on the practice green at Jim Ager Golf Course on Monday. Lincoln got into the high 80s on Monday and could touch 90 on Tuesday, according to the National Weather Service. There is a chance for thunderstorms Tuesday night with rain chances continuing the rest of the week. The weather service is calling for a high of 80 on Wednesday and 74 on Thursday.

KENNETH FERRIERA, Journal Star

Maintainence technician Harold Lyon, right, chisels open a time capsule at the William Jennings Bryan house at Bryan East Campus with help from fellow technician Ced Schweitzer, left, on Tuesday. The capsule was placed in a wall at the hospital in June 1987 to celebrate the hospital's 60 years of service. Lyon was part of the team that placed the capsule nearly four decades ago.

ARTHUR H. TRICKETT-WILE, Journal Star

A red steel beam in the upper arena reflects the players on the court on Saturday, Sept. 13, 2025, as Nebraska hosts Grand Canyon University at Bob Devaney Sports Center in Lincoln. Nebraska swept Grand Canyon 3-0.

ARTHUR H. TRICKETT-WILE,Journal Star

The Creighton Prep Junior Jays are reflected in a drum in the marching band section during warmups as the Creighton Prep Junior Jays face off against the Lincoln Southeast Knights on Friday, Sept. 12, 2025, at Seacrest Field in Lincoln. Creighton Prep was up 17-10 going into the half.

ARTHUR H. TRICKETT-WILE,Journal Star

Stones stand in the ground on Tuesday, Sept. 9, 2025, at the Standing Stone Circle on the Prarie, which Renae Koehler constructed on her farm in Firth. Koehler, a minister for over 35 years, found inspiration in her study of various world religions, and in visiting other stone circle sanctuaries—such as Stonehenge—while traveling across Europe. “It’s an energy spot, and those big stones are the doorways to the Four Directions,” she said. “So we made sure we lined it up to the North, South, East and West.” Koehler says she’s hosted various rituals in the circle, and that guests will whisper to, listen for and even kiss the massive stones. Most of those standing upright were embedded more than 5 feet deep, so she estimates they’ll be standing at least a few millennia. When she interacts with the stones, she says she finds them “mystical, alive and healing.”

ARTHUR H. TRICKETT-WILE, Journal Star

Standing Bear’s Maddie Kulhanek (17) pitches on Tuesday, Sept. 9, 2025, as the Standing Bear Grizzlies take on the Waverly Vikings at Waverly High School in Waverly. Waverly took down Standing Bear 10-7.

ARTHUR H. TRICKETT-WILE,Journal Star

Kimberly Donis, a Park Middle School eight grader and member of the school's Hope Squad, adds a butterfly to a tree display Wednesday as part of an activity to raise awareness on World Suicide Prevention Day. Hope Squads are peer-led suicide prevention groups that are in more than 1,600 schools nationwide, including all Lincoln Public Schools middle and high schools.

ARTHUR H. TRICKETT-WILE, Journal Star

Noah Lewis, bottom first left, and Jessica Ramos, bottom left, cheer on the Huskers after a touchdown in the second quarter on Saturday, Sep. 13, 2024, at Memorial Stadium.

KENNETH FERRIERA,Journal Star

Nebraska's Luke Lindenmeyer (44) proposes to his girlfriend, Scarlets dance team member Kailyn Storovich, after the game on Saturday, Sep. 5, 2025, at Memorial Stadium. “I’m so shocked but so excited,” Storovich said. “I love him so much.” Nebraska shut out Akron 68-0.

ARTHUR H. TRICKETT-WILE,Journal Star

Board members stand and applaud John Skretta, first right, as he is named the official superintendent of the Lincoln Public School district on Tuesday.

KENNETH FERRIERA,Journal Star

Nebraska's Nyziah Hunter (13) and Emmett Johnson (21) dance in celebration of Johnson's touchdown in the first quarter against Akron on Saturday.

KENNETH FERRIERA, Journal Star

A Lightshow with drones takes place between the third and fourth quarter during the game between Nebraska and Akron on Saturday, Sep. 6, 2025, at Memorial Stadium.

KENNETH FERRIERA,Journal Star

Courtney Brummel, coordinator of the Great Plains Master Beekeeping program, blows onto a honey frame to move honeybees out of the way as she demonstrates how to perform health inspections and other checks during an apiary class at the University of Nebraska-Lincoln's East Campus on Aug. 14. Many Nebraskans are turning to beekeeping through programs like the one Brummel leads.

KENNETH FERRIERA, Journal Star

Wright State’s Reilly Zegunis (2) and Elena Dubuc (4) defend a hit by Nebraska’s Skyler Pierce (21) in the second set at the Bob Devaney Sports Center on Friday, Sept. 5, 2025, in Lincoln.

KENNETH FERRIERA,Journal Star

Kearney's Willa Lewandowski (28) and Sophie Glandt (8) try to block a kill from Lincoln Southwest's Emma Rink (22) in the first set at Lincoln Southwest High School on Thursday, Sept. 4, 2025, in Lincoln.

KENNETH FERRIERA,Journal Star

Nebraska offensive line coach Donovan Raiola leads his players back to the locker room as eager fans lean over the banisters to catch high-fives before the game against Cincinnati on Thursday, Aug. 28, 2025, at Arrowhead Stadium.

KENNETH FERRIERA,Journal Star

Nebraska's Malcolm Hartzog (7) reacts after his interception with his teammates Ceyair Wright (1), Marques Buford (3), and DeShon Singleton (8) in the fourth quarter against Cincinnati on Thursday at Arrowhead Stadium in Kansas City, Mo.

KENNETH FERRIERA, Journal Star

Nebraska's Malcolm Hartzog (7) intercepts a pass intended for Cincinnati's Caleb Goodie (10) late in the fourth quarter Thursday at Arrowhead Stadium in Kansas City, Mo.

KENNETH FERRIERA, Journal Star

Nebraska head coach Matt Rhule reacts as he calls a timeout in the fourth quarter on Thursday, Aug. 28, 2025, at Arrowhead Stadium.

KENNETH FERRIERA,Journal Star

Levai Alles, from Lincoln, holds a sign during a protest against the planned ICE detention facility in McCook on Friday, Aug. 29, 2025, at Nebraska State Capitol in Lincoln. “Camps in America are the least American thing that we could be doing as a country—let alone in Nebraska,” Alles said.

ARTHUR H. TRICKETT-WILE,Journal Star

2-year-old Aleigha Dove catches bubbles on Friday, Aug. 29, 2025, at the Highlands Academy childcare center in Lincoln. The academy, situated at 5901 Northwest 1st Street, offers curriculum based childcare for children age 6 weeks through 12 years.

ARTHUR H. TRICKETT-WILE,Journal Star

Bennington's Jake Russell (8) celebrates his touchdown catch with his teammates, Brett Langan (51) and Charlie Swoboda (54) during the second quarter at Waverly High School on Friday, Aug. 29, 2025, in Waverly.

KENNETH FERRIERA,Journal Star

Waverly's Nathan Axmann (27) hurdles over Bennington players as he runs the ball in the first quarter at Waverly High School on Friday, Aug. 29, 2025, in Waverly.

KENNETH FERRIERA,Journal Star

Bennington players locking arms wait to enter onto the field before the game at Waverly High School on Friday, Aug. 29, 2025, in Waverly.

KENNETH FERRIERA,Journal Star

Lincoln Paddle Company owner Kyle Winchell poses for a portrait at Holmes Lake boat ramp on Saturday, Aug. 30, 2025, in Lincoln.

KENNETH FERRIERA,Journal Star

Cincinnati's Christian Harrison (5) and Xavier Williams (36) tackle Nebraska's Janiran Bonner (4), causing him to lose his grip on the ball in the fourth quarter on Thursday, Aug. 28, 2025, at Arrowhead Stadium.

KENNETH FERRIERA,Journal Star

Lincoln Southeast’s Trey O'Hara (33) celebrates a fumble recovery on Thursday against Grand Island at Seacrest Field. 

ARTHUR H. TRICKETT-WILE,Journal Star

Reach Jenna Ebbers at 402-473-2657 or jebbers@journalstar.com.

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Jenna Ebbers

Jenna Ebbers

K-12 education reporter

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Dravet Syndrome

6-year-old Gracie Wolfe plays on the trampoline with her seizure dog, Addie —a 3-year-old golden retriever — on Thursday at her family's home in Valparaiso. Gracie has Dravet syndrome, a rare and severe form of epilepsy, and routinely experiences seizures.

6-year-old Gracie Wolfe pokes at her iPad on the couch as her 1-year-old cat, Bean, naps beside her on Thursday at her family's home in Valparaiso. Gracie has Dravet syndrome, a rare and severe form of epilepsy, and routinely experiences seizures.

6-year-old Gracie Wolfe and her mother, Tes Wolfe, sit on a couch at their home in Valparaiso. Tes Wolfe has documented her daughter's battle with Dravet syndrome on TikTok.

Jamison Wolfe pets Addie, his daughter's seizure-alert dog, on Thursday at the Wolfe family home in Valparaiso.

Tes Wolfe displays a seizure alarm voicemail she received earlier this month from an app installed on her daughter Gracie's Apple Watch on Thursday at their home in Valparaiso. 

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