The fog was still hanging over the playground on a recent Monday morning, but no one seemed to mind. Almost all the classrooms at St. Patrick School had paused for a mid-morning recess to take advantage of what might be one of the final warm days of the year.
Not everyone made it outside though. While her classmates chased each other under the monkey bars, kindergartener Jasmine was inside, sitting on a blanket next to her teacher, Courtney Krebill.
She just had a seizure, Mrs. Krebill whispered as a paraprofessional took over for her. It wasn’t the first seizure Jasmine had at school, and it likely won’t be the last. The six-year old and her family live a life they couldn’t have envisioned a year and a half ago. Jaz, as Jasmine is often called, was diagnosed with epilepsy last school year.
An imaginative girl who loves drawing, dressing up and everything sparkles, Jasmine has both good days and bad days. Good days include laughing, climbing and playing with her friends. However, on bad days, Jaz is left feeling tired, wobbly and impulsive. Not surprisingly, her parents, Ben and Courtney Bosse, have made it their mission to maximize their daughter’s good days.
It’s been a group effort as the teachers and staff at St. Patrick School have partnered with the family. Together, they are trying to make life as normal as possible for a little girl facing challenges many of us could never imagine.
Rare Form of Epilepsy
A month before Jasmine’s fifth birthday, she had her first seizure. A subsequent EEG was abnormal, but it couldn’t convey what lay in store for the family.
“We didn’t know what we were walking into,” Courtney says. When all the testing and evaluations were completed, Jasmine was diagnosed with a rare form of epilepsy called myoclonic-astatic epilepsy, also known as Doose syndrome.
Affecting only 1-2 percent of childhood-onset epilepsies, it is especially rare in girls. One defining feature of Doose syndrome is that seizures associated with it are difficult to control.
Medications that are effective for some epilepsies don’t work for those with Doose syndrome. Jasmine follows a special diet and sees health care professionals in both Grand Rapids and Chicago to manage her condition.
As a result, Ben and Courtney have adjusted expectations and added flexibility to their daily routines. “With her, every day is different,” Courtney says. “Sometimes, when it’s bad, you have to live in the day.” At those times, Jasmine’s parents aren’t thinking about what the future might hold for her but rather how to take care of her immediate needs.
School Offers Ongoing Support
Jasmine was already enrolled in the preschool program at St. Patrick School when her seizures started. Courtney and preschool teacher Kristina Gwisdalla worked together to create a plan to address the challenges that come with a diagnosis of epilepsy. “Last year, Kristina was integral in getting Jasmine back into the classroom,” Courtney says.
This year, Jasmine moved to kindergarten with her classmates. Jaz may show up a little later in the morning if needed, and she takes Fridays off. Otherwise, she works alongside her classmates on the same lessons and tasks.
In addition to a dedicated paraprofessional, aides in the classroom are available to help Jasmine. When she needs to take a sensory break, she may move elsewhere in the room or take time outside the classroom as needed.
Courtney says moving her daughter to another school wasn’t something she wanted to do. “I don’t want to change another part of her life,” she says, and she has found St. Patrick School to be a place with Jasmine’s best interests at heart. “I feel really comfortable with her there. It feels
safe. Everyone there loves her.”
After Jasmine’s diagnosis, principal Scott Czarnopys instituted a standing monthly meeting with the Bosse family. “He’s been a huge help,” Courtney says. The meetings are a chance to discuss concerns, strategize and coordinate with other educators and support services.
A Learning Environment for Everyone
The goal at St. Patrick School is to create an inclusive community that supports the needs of all children, “We foster an environment that teaches from an early age that God created us all as unique individuals,” Mrs. Krebill explains. That means helping students understand that
everyone has different needs.
“They ask a lot of questions,” Mrs. Krebill says of Jasmine’s kindergarten classmates, but they have no problem accepting that their friend Jaz may do things a little differently from them. They are also quick to help whenever they can. “If she needs a partner, they all say pick me, pick me,” her teacher says.
It’s unclear what the future holds for Jasmine. About 60-70 percent of children with Doose syndrome outgrow their seizures by middle school or high school. Some of these children go on to have no lingering side effects from their ordeal while others may struggle with lifelong impairments. There is no way to predict the outcome either so the Bosse family is left to hope and pray that this period of life will someday be nothing more than a memory.
“It’s hard to set future goals,” Courtney says. “You just try to accept what you’ve been handed.” For now, Ben and Courtney are focused on providing their daughter with the best care possible and capturing the good moments whenever they can. At school, the staff of St. Patrick School are doing the same. Together with her family, they hope to carry Jasmine through a difficult time and into the light of a better tomorrow.