Julie and Doug Hutchison lost their sixteen–year–old daughter Chelsea on April 19, 2009. She passed away after a seizure in her sleep. Sudden Unexpected Death In Epilepsy, or “SUDEP” affects roughly 1 in 1000 people with epilepsy—1 in 100 with uncontrolled seizures. Chelsea’s story emphasizes the urgency and importance of finding cures for epilepsy. And it also reveals how an amazing family can rise to face epilepsy’s most awful challenge.
After losing Chelsea, the Hutchisons organized The Chelsea Hutchison Foundation (CHF) to help other families. Since 2009, CHF has distributed 89 Emfit monitors, 43 seizure alert dog grants and 11 SmartWatches to help alert people and caregivers to eminent seizures—and possibly avoid tragedy.
Julie cannot explain her loss in words—“To say it was horrendous or excruciatingly painful…those words minimize the real truth behind it.” Doug tells me, “To be completely taken aback by what went down was just unbelievable.” It seems that one of the most difficult things about the loss was that it came as such a total surprise. The Hutchisons had absolutely no idea that Chelsea was at risk during the years, months, days or hours leading up to the night of April 19, 2009.
When asked about how she has found support for her loss, Julie immediately explains, “The first thing that comes into my mind is just who Chelsea was as a person.” She fights back tears before saying, “If somebody was sad or lonely, she was the one who was jumping in and trying to make changes in their life.” They know that Chelsea would not have wanted them to be torn apart. “Chelsea hated people being sad.”
They are still grieving, but it is obvious that Chelsea brings back many of their happiest memories. Julie explains, “One thing that every parent who’s in our shoes is desperate to do is to keep their child’s memory alive. I have conversations like that with people every day, and talking with people about her is healing. The people that we’ve met since losing Chelsea are life–long friends and I refer to them as gifts from Chelsea.” Julie goes on to say that, “Keeping her at the top of our mind is what the Foundation is all about. People say all the time, ‘Thank You Chelsea.’” For me, that’s huge.”
The Hutchisons became involved with The Compassionate Friends, a group for bereaved parents. As Doug says, “when you’ve lost a child, your support system will change drastically. People you’d never dreamed would be supportive come forward.”
Julie remembers the Director asking them on one of their first visits, “When you come face to face with your child again, what will you tell them you did with the rest of your life, and will they be proud?” This reminded them that Chelsea was gone but it also reminded them that they would be reunited again. Doug says, “As painful as that story is, we never hesitate to tell people.”
Doctors and Treatment
Julie believes that anyone with tonic clonic seizures should have an Emfit Monitor in case of any seizures in bed. Doug says that a SmartWatch can be empowering as a safety link between young adults/adults and loved ones. “It just provides another line of defense” he explains, “…it lessens the anxiety that parents have.”
The Hutchisons are well–known in Denver for seizure response dogs. Dogs provide companionship, they can alert owners to seizures, respond to seizures, and they can lower stress levels—which can reduce the frequency of seizures. But Doug stresses that “with seizure response dogs it is important for the family to keep up the training.” He emphasizes that they can be expensive to purchase and to own—and that it is critical to maintain their training.
Tips Tricks and Advice
Julie credits their grief counselor with advising them to “not let anybody ‘should’ on us.” Julie goes on, “You have to know your limits, and take it at your own pace.” Doug lays it out clearly: “Don’t worry about what other people think or do. A lot of people mean well…But truly, sometimes you just have to curl up in your own fetal position and deal with it on your own.”
But they also value community. Julie “finds great comfort in being around people who understand this. You don’t have to explain yourself. I think it’s really people who have been down the same path. It’s so hard to explain to somebody that…you know, they want to understand, but you can’t put it into words.”
They are also very spiritual, Julie says: “We both believe [Chelsea] is running the show. We feel a very strong closeness to her.”
They have found comfort in seeing a spiritual medium. Doug believes that she has colored their attitude and “was able to tell us things that made sense and…” he chuckles for a minute before opting against further explanation, “Some people are gonna go along with it, some aren’t.” Julie laughs from the other line, listening to Doug and listening to my hammering keyboard, “Doug, I think that was Stephen just typing ‘Wacko.’” I promised them that I wouldn’t put that in the story, but then Doug let me know that he “wears [craziness] on his sleeve with relish.” I laugh pretty hard at that, and then explain to both of them that in fact I had just been typing in Julie’s previous comment: “There’s just no right way to go about this…you just gotta do what you gotta do to survive.” The Hutchisons have been finding a path, even in spite of grief. And they have been helping many others along the way too.