A small purple ribbon is pinned to Tony DeRosier’s Minnesota Wild cap.
It’s a reminder of his daughter Dalerie, his independent spark plug of a teenager.
“All of my hats have them,” Tony said. “Every one that I wear from now on will have one on it.”
It’s but one token of a collection of mementos and memories Tony and wife Tanya Bestul DeRosier carry with them each day, each hour and each minute since the night they lost the little girl they adopted as a baby.
“We talk about her all the time. She’s always with us,” Tanya said through the din of a coffee shop. “We’re always talking about her. ‘Oh, Dalerie would really like that.’”
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She and Tony, along with 15-year-old son Ryan and Dalerie’s 22-year-old boyfriend Gabriel Swim, gathered at a table in downtown Brainerd’s Coco Moon coffee shop last month to talk about Dalerie some more.
The color of Tony’s ribbon holds significance — purple is the color of epilepsy awareness. Diagnosed as a 9-year-old, Dalerie lived with the condition until her death at age 18 on May 15, weeks shy of her high school graduation. That’s the night Tanya found her daughter lying on bedroom floor, not breathing. Her family believes she suffered a seizure in her sleep and succumbed to sudden unexpected death in epilepsy, or SUDEP.
‘Even the research we had done, I think as a parent you kind of — as far as SUDEP — you look at it, ‘Well, it won’t happen to my child,’” Tanya said. “You kind of put those blinders on. … We know she had a seizure that night, I know that as a mother.”
Bringing home baby
The DeRosiers’ lives with Dalerie began one summer 17 years ago, when the Brainerd couple took home a 19-month-old baby they’d learned about less than a week earlier. Abandoned by her mother at the hospital, Dalerie lived with relatives through the first months of her life. She arrived in the dress she wore, along with a swimsuit, blanket, fluffy stuffed duck and a nebulizer for her asthma.
The couple said they were surprised by the medical device, and soon learned their new daughter also suffered a number of febrile seizures — the kind young children sometimes have when they’ve spiked a fever. Her health issues were no deterrent for the DeRosiers, who after seven years of trying to start a family were determined to become parents.
Faced with the new reality of parenthood coupled with a learning curve on Dalerie’s conditions, the couple said there was some anxiety in the beginning. Would they measure up as adoptive parents of a baby with medical needs?
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“You bring home this baby that you don’t know what to do with, and she’s 19 months old so she’s kind of got her own personality going. And I’m afraid these people are going to take her away from us,” Tanya said.
It was nearly a year before Dalerie suffered the first febrile seizure in the DeRosiers’ care. By that point, she was legally Tony and Tanya’s daughter.
“That’s when they started walking us through what to do and what not to do, so it was a learning curve for us,” Tony said. “We were always told that she would probably grow out of them by 6 or 7.”
After age 4, Dalerie didn’t have another febrile seizure. By then, she was also the proud big sister to adopted baby brother Ryan, who came home at 1 month old. It wasn’t until four years later, while holding her new puppy Maggie, that Dalerie fell the floor and began to seize. She spent the night in the hospital where doctors ran a battery of tests, including an EEG to detect electrical activity in her brain. A neurologist evaluated her and epilepsy was a possibility, but the family still held out hope the seizure was a freak occurrence, perhaps brought on by stress or hormones.
That weekend, it happened again.
“I saw her drop and went to the nearest adult and said she was on the floor,” Ryan said.
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From that point forward, Dalerie was prescribed medication to control her seizures, and the DeRosiers faced another change in their family’s lives.
A new normal
It soon became clear an epilepsy diagnosis wasn’t going to stand in Dalerie’s way. The vibrant girl grew up into a thoughtful, opinionated young woman who worked hard in pursuit of her passions, her parents said. She loved to ride four-wheelers and played for Coach Dad in summer league softball. Perhaps appearing quiet to strangers, Dalerie was an outgoing, sassy presence in the lives of those closest to her.
“I think she just kind of went out and did her own thing, was her own personality and she didn’t care what anybody else thought. She was just going to do it her way,” Tony said.
The DeRosiers said they made sure their daughter lived as normal of a life as possible as a child, taking extra care to ensure epilepsy didn’t make her feel different.
“Every time she was swimming or every time she’d go off on her four wheeler or off in the car or all of those different things, I’d think, if she’d have a seizure, will there be time?” Tanya said. “We could’ve sheltered her from that and not let her live life. I’m glad she was able to have all the experiences that she had and we didn’t hold her back.”
As she grew older, Dalerie developed an interest in brain science. Born from her experiences with epilepsy and the knowledge of her birth mother’s diagnosis of schizophrenia, her fascination led her to read books and watch documentaries on the subject. She even made a documentary of her own — a 10-minute educational piece on epilepsy and SUDEP.
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Inspired, Dalerie began to mull a career as a nurse. It’d been in the back of her mind for awhile, though. In a seventh grade worksheet, Dalerie predicted her future would be as a nurse and a wife. At the same time, Tanya decided to pursue a change in her own career path, walking alongside her daughter toward nursing.
Dalerie’s interest grew and she enrolled in post-secondary education at Central Lakes College. She also chose to quit her job at Fleet Farm to pursue a position at Good Samaritan Society-Bethany and later Essentia Health-St. Joseph’s Medical Center. But not before she got to know her co-worker Gabriel, who nearly botched the young couple’s first date after a summer of hanging out together.
“I pulled the vehicle over on the way back because I was going to ask her out,” Gabriel said. “I got nervous and didn’t. … I sat there stuttering and bumbling for awhile. I said, ‘You know, I’m just going to bring you home.’ When we got back to the house … she just kissed me.”
Thus began a romance peppered with pizza and movies and plans for the future. Gabriel knew about Dalerie’s epilepsy — she’d given him the fundamentals in an effort to prepare him.
“She wanted me to be aware how things would go down, so I didn’t freak out when it happened,” he said. “She said, ‘You’re going to be spending a lot time with me so it’s probably going to happen when you’re around.’ I was never there for any of them. But she had two while we were dating.”
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The first of those came the day she was supposed to attend Christmas Ball at Brainerd High School with a friend. After learning her friend no longer would accompany her, Dalerie was upset and nervous about the dance. She had a seizure in the bathroom.
“I think stress was a trigger for her and that was her senior year,” Tanya said. “The aspect of going to C-Ball, I think, was just that anxiety of that social interaction was a trigger for her.”
Gabriel, 21 at the time, told Dalerie to get dressed for the dance anyway.
“Then her and I went out for a drive, and these two (Tony and Tanya) set up her room with a color changing light and a speaker and we just had it in her room instead,” Gabriel said.
“We curled her hair up and they just had a little thing at home,” Tanya added.
Coping with epilepsy
While she handled her diagnosis well, Dalerie tested the boundaries of parents’ trust at times. In her later teen years, Dalerie sometimes secretly stopped her medication because she didn’t like the side effects. Following one of those stoppages, she had a seizure at the end of her driveway in front of a busload of kids.
“She would complain that it made her feel kind of weird, fuzzy while she tried to do schoolwork. But as a parent, your daughter’s not having seizures,” Tanya said. “As she grew older and more into the teenage years, she didn’t like taking the Topamax.”
A seizure that arrived quickly after a doctor-approved test run without medication showed Dalerie still needed the pills. If she wanted her driver’s license, she’d have to be free of seizures for at least three months. This knowledge led Dalerie to sometimes hide the fact she’d had a seizure from her parents. It was teenage rebellion, which for Dalerie had the potential for unique consequences.
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“It was just a matter of trying to talk with her and make her see the ramifications if she weren’t to take them,” Tanya said. “She would do good for awhile and then she would feel fine and she would quit taking them, so we just kind of went back and forth.”
As Dalerie approached 18, she asked to change her medication to Keppra, a different anti-seizure drug that offered the opportunity for a clearer head and a smaller risk of impacting Dalerie’s future chances at motherhood. She made the switch, and at first it seemed to be a positive change. But Keppra was more volatile than Dopamax, and it required Dalerie to become stricter at taking her medication on time. Her epilepsy and the auras associated with it seemed to intensify in frequency and impact. During one of her last seizures, Dalerie turned blue from lack of oxygen — the same state Tanya found her in that May night.
“That night, I was talking to her at 8, right before 9 o’clock, and she said she was going to bed.
She must have fallen asleep. I got home at 11 and she had passed,” Tanya said.
Keeping Dalerie’s memory alive
The DeRosiers believe Dalerie missed her 10 p.m. dosage of her medication. Her toxicology results showed the drug was barely at a therapeutic level in her blood. They also believe the seizure that followed led to SUDEP — sudden unexplained death in epilepsy — the causes of which remain unclear. The Epilepsy Foundation reports some researchers believe a seizure causes an irregular heart rhythm, while other research shows it can create breathing difficulties leading to death. It may be a combination of these things and differ between cases, the foundation states.
In the wake of their loss, Dalerie’s loved ones want people to know epilepsy is a mostly invisible condition that affects many. They seek to educate the public on how to safely respond to seizures and to recognize those who experience them are normal people — their family members, co-workers, neighbors and friends. The Epilepsy Foundation reports 1 in 100 people will suffer a seizure or will be diagnosed with epilepsy in their lives.
“There’s not enough knowledge out there of what causes it, and how to prevent it. … She was a normal, functioning, beautiful young lady who was out doing everything that everybody else was doing, she just would have this happen. She would take a half-hour of her life and she was back to normal, and you would never know the difference,” Tanya said. “After (her death), I found out there was other people struggling with seizures and stuff that I never knew. I think people keep it hidden because there’s a stigma to it.”
In coping with the grief of losing Dalerie, her family, friends and loved ones see constant reminders. Her bedroom, left untouched. Sing-alongs to Taylor Swift. Her dog Dexter, who started howling after losing his nightly sleeping partner. Unplayed games of Skip-Bo and Phase 10. A full bottle of pocket change in the closet, once used for special movie and stuffed animal treats. A golden birthday this week she never got to celebrate.
“I really don’t know how to word it. There were a lot of plans. She would plan a lot of stuff,” Gabriel said. “For the most part, it sounded like she had things planned out all the way until we were real old. Now it’s just all kind of not possible anymore.”
“It’s a day by day, moment by moment thing. We can be just fine, the next minute we could have a complete breakdown,” Tony said. “We just gotta take it one step at a time, one day at a time, one hour at a time. All of us. We have days that are a lot better than others. And there are days when it takes everything in our power just to hold it together. It’s just the way it is.”
One thing’s certain: Dalerie will always be with those who loved her. A contingent of family members and close family friends — including Tony, Tanya and Gabriel — got tattoos in her honor. Several feature the same angel wing Dalerie got tattooed herself as an 18th birthday present.
“She was a very giving person who was concerned about other people. She worked hard,” Tanya said. “Everybody who knew her loved her. … I was surprised at some of the people who afterwards that were like, she really touched me with this or with that, that kind of reached out.”
If there’s anything the DeRosiers hope others take away from their daughter’s story, it’s to savor every moment with loved ones.
“Enjoy it,” Tanya said, “because you never know when it’s going to end.”
Seizure first aid
“When most people think of a seizure, they think of a generalized tonic-clonic seizure, also called a grand mal seizure,” the Centers for Disease Control and Prevention reports. “In this type of seizure, the person may cry out, fall, shake or jerk, and become unaware of what’s going on around them.”
Here’s how to help someone who is having this type of seizure:
Ease the person to the floor.
Turn the person gently onto one side.This will help the person breathe.
Clear the area around the person of anything hard or sharp. This can prevent injury.
Put something soft and flat, like a folded jacket, under his or her head.
Remove eyeglasses.
Loosen ties or anything around the neck that may make it hard to breathe.
Time the seizure. Call 911 if the seizure lasts longer than 5 minutes.
Here’s what not to do:
Do not hold the person down or try to stop his or her movements.
Do not put anything in the person’s mouth. This can injure teeth or the jaw. A person having a seizure cannot swallow his or her tongue.
Do not try to give mouth-to-mouth breaths (like CPR). People usually start breathing again on their own after a seizure.
Do not offer the person water or food until he or she is fully alert.
Source: CDC.
CHELSEY PERKINS may be reached at 218-855-5874 or chelsey.perkins@brainerddispatch.com . Follow on Twitter at twitter.com/DispatchChelsey .
