By: Charity Meier | Novi Note | Published January 14, 2026
NOVI — Thanks to the efforts of the Novi Community School District and Make-A-Wish Michigan, a Pinckney teen and her family were able to enjoy a Disney cruise this past December.
Lily Terpstra, 13, has lissencephaly, cerebral palsy and a cognitive impairment. The double cortex lissencephaly was discovered when she began having seizures at the age of 3.
“She has two active layers of cortex in her brain, so it’s basically like an electrical storm all the time,” said Lily’s mother, Erin Terpstra.
As a result of the double cortex lissencephaly, she has seizures daily and has undergone two neurosurgical procedures to help reduce the frequency of the seizures. At age 6, Lily had a vagus nerve stimulator implanted, and at 10, she had a deep-brain stimulator implanted, which required a full brain surgery. The deep-brain stimulator is connected to a transmitter in her abdomen. Both devices work to try to prevent and to stop seizures once they start.
According to Erin Terpstra, there is nothing that can stop her daughter’s seizures all together. She said they have tried every anti-seizure medication that is available and most of them don’t work at all. Erin Terpstra said that the six medications her daughter is on work just enough to help limit them, but not enough to stop them.
She said she has to have rescue medications on hand to help bring her out of a seizure at all times and that the seizures are so intense that her daughter frequently injures herself because of them. Most recently, she fell during a seizure and got a black eye, and she broke her arm last summer and got her cast off just before Christmas, in time to go on her trip.
Erin Terpstra said they got Lily a service dog, Cliff, a golden retriever, a few years ago from Four Paws for Ability in Ohio, which specializes in epilepsy service dogs for veterans and children. Cliff is trained specifically to alert someone if Lily is having a seizure.
“He is her favorite thing on the planet,” Erin Terpstra said.
She said Cliff will bark to alert someone if Lily is having a seizure, he sleeps with her and cuddles, and he provides them with some peace of mind, as he is always on full alert.
Lily is mentally 3 years old because of the cognitive impairment, which is likely worsened by the seizures, her mother said.
“She’s just an incredible kid,” her mother said. “She is the most fierce, determined child you will ever meet, and she is so funny.”
Erin Terpstra said that her daughter’s favorite things are Christmas and Disney. However, as Lily is also autistic, it is difficult for her daughter to deal with long lines and crowds.
“Any Disney movie we have watched 500 million times,” Erin Terpstra said before the cruise. “The tricky part is that Lily is also autistic as well. So, like crowds and long lines and things like that are really hard for Lily. So, a cruise will allow us to kind of experience Disney with her characters in the movies that she loves, but we don’t necessarily have to be waiting in lines and in crazy crowds, and she wouldn’t enjoy the rides at Disney, so it’s kind of a Disney-light.”
Erin Terpstra said her daughter’s favorite characters include Nemo, the Incredibles, the characters from “Inside Out,” Mickey and Minnie, and any of the animated movie characters.
Terpstra told the Novi Note Jan. 13 that the trip was just perfect. She said Lily was “pretty stoked” to see the ocean.
“It was so perfect — absolutely, wonderfully perfect. Yeah, she had a blast and everyone found something that they were able to do and that they loved about the trip. It really was wonderful,” she said.
Despite a snow day in the middle of the Wish Week fundraising, the Novi Community School District raised a record $25,000 for Lily and her immediate family to go on the Disney Cruise Dec. 17-21. The funds covered the cruise, airfare and spending money. The majority of the funds, $20,000, was raised by Novi High School students.
Some of the fundraising events included a pancake breakfast, change donations that stall the start of class while the teacher counts it, a students-versus-staff basketball game, food trucks, and the opportunity to hit a teacher or a senior with a pie.
“We were very fortunate that the two fundraisers we had (scheduled) for the snow day, we were able to very easily move them to another day,” said Novi High School senior Clara Pohlonski, who is the executive board vice president for the NHS student council, which plans and organizes the activities for wish week. “So, that was a blessing that we were still able to recover from that.”
Pohlonski said that the annual event not only helps grant the wish of a child, but it unites the students as they join forces for the cause.
She was one of the students who signed up to get hit by a pie. She said it was “super fun” to participate in the event.
“It was so cool to see, like, the whole lunchroom come together,” Pohlonski said. “A lot of times we just stay at what we consider our tables. But for pie-a-teacher or tape-a-teacher-to-a-wall, a lot of people came and crowded around, and it showed, like, how unified that the school was getting around these fundraisers, and it was just so cool to see everyone come together like that.”