- Associated Press - Saturday, March 26, 2016

GREAT FALLS, Mont. (AP) - Thirteen-year-old Delanie Sand entered the Pizza Hut on 10th Avenue South a little hesitantly.

Her hands went up to her face and she kept asking, “What’s going on?” and adding “I don’t know what to do.”

You see, there were three Montana Highway Patrol troopers there lying in wait for her.

What was the outgoing, bubbly blond to do?

How about smile?

Delanie became one of 417 critically ill children ages 2 to 18 to benefit from the Montana Hope Project after it started in 1984 when a group of troopers brought a vanload of children up to Glacier National Park with money out of their own pockets.

Delanie, an eighth-grader at Greenfield School near Fairfield who has been suffering from seizures since she was 9 years old, will go to Hawaii this spring with her family as part of the program.

“There are a lot of things she can’t do that other kids her age are doing,” said her mother, Heather Sand, who brought up driver’s education, soaking in the hot tub or swimming by herself or even just staying at home alone.

“What used to be normal isn’t normal anymore,” her father, Dale Sand, said.

In May, her hopes for a nice trip to Hawaii are everything you would expect from a teenage girl: the beach, paddleboarding, surfing and, her favorite, shaved ice.

“She gets really excited about the shaved ice,” Heather Sand said. “We tease her about it.”

Her big dream would be to learn to surf from Bethany Hamilton, who became famous for her autobiography and movie “Soul Surfer” after a shark attacked her while she was surfing and bit off her forearm. She went on to win a national title.

“She’s my hero and role model,” Delanie said. “I have her poster.”

Delanie’s enthusiasm at the Pizza Hut dinner was contagious as she teased family members and the troopers. “How old are you?” she asked one of the troopers. “Old,” he answered, laughing at her.

Delanie can get down, though.

The worst is perhaps when she flaps her arms and drops things when a seizure sets in.

“It’s totally embarrassing to her,” Heather Sand said. “It’s just awful.”

“It’s really gotten to her, the things she has not been able to do,” said Shawn Ostberg, the area coordinator for the Montana Hope Project. “Until they figure out what is causing her seizures, she’s not going to be able to (do them). (The committee that grants the wishes) saw a girl who needed a bright spot.”

Ostberg, who is not part of the committee that grants the wishes, knows well Delanie’s struggles. He is her uncle. As the area coordinator, it is his job to find young people who need those bright spots. So far, five of the young people he has found have been granted wishes from his area, which stretches from Glacier County to Havre to Lewistown and then over to Teton County, where he is a deputy sheriff.

What has made life easier is her friends, with whom she likes to go to movies, hang out and do “typical teenage stuff,” said Heather Sand. “They are very supportive.”

Delanie is a good student, but she does not retain information in class during times when she has petit mal seizures, which happen several times a day.

“Her grades have slipped since she started having seizures,” Heather Sand said. “She works so hard to figure out what she’s missed.”

Still, the animal lover (she raises a steer each year for 4H, has six dogs at the family’s country home outside Fairfield, chickens, a fainting goat and a chinchilla) is looking at being a veterinarian or a nurse.

“But not if she can’t get the seizures under control,” Heather Sand said.

Delanie has been to the Seattle Children’s Hospital and seen numerous others to try to get an answer for why the seizures are occurring, and the family is lining up a trip to the Mayo Clinic to get more answers undergo brain mapping and explore the possibility of surgery.

In addition to the petit mal seizures, Delanie also has grand mal seizures, which used to occur about once every four months or so but have reduced.

Delanie has a device like a pacemaker around the vagus nerve in her neck that sends electric pulses to her brain in an attempt to reduce the frequency of the seizures. She also wears a magnet on her wrist that can be swiped across the vagus nerve to send more powerful pulses through the wire to interrupt the seizure, according to Heather Sand, a nurse practitioner with Premier Care Pediatrics who also does Medicare assessments for Matrix Medical Providers.

She got a seizure-alert service dog last summer to give her comfort and peace of mind.

“He can do anything but talk,” Dale Sand said.

Delanie is very attached to Saks, as she is to most animals.

Dale describes a couple of incidents that show her connection to animals. She had a seizure while showing off her steer in the 4-H ring and the animal didn’t once try to get away. Another time, she had a seizure while riding her horse. She dropped the reins but the horse “just stood there until she was done with her seizure,” he said.

Accompanying Delanie to Hawaii will be her parents, Heather and Dale (high school sweethearts who both grew up on the Fairfield bench) and her brother Dalton, a 17-year-old junior at C.M. Russell High. Oldest brother Carson, a sophomore at Montana Western, won’t be able to make the trip.

“I can’t wait,” Delanie said. “There are lots of things to do and it’s so pretty and my aunt and uncle live there.”

And the shaved ice.

“They do have really good shaved ice,” she said.

___

Information from: Great Falls Tribune, http://www.greatfallstribune.com

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