SPRING LAKE, Mich. — Eleven-year-old Ben Bator loves music, swimming, and being outside. He is also one of fewer than 1,000 people in the world diagnosed with KAT6A syndrome — and this Friday, his school is walking for him.
WATCH: Spring Lake student with rare KAT6 syndrome inspires school's fundraising walk this Friday
Spring Lake Public Schools, a Special Olympics Unified Champion school district, is hosting its second annual KATwalk at the middle school football field and track, capping off an inclusion spirit week for fifth through eighth graders aimed at raising awareness and funds for KAT6 syndrome research.
Middle school students will head to the track with their homerooms at 7:55 a.m. and walk until 8:30 a.m. Intermediate students will follow at 8:45 a.m. and walk until 9:15 a.m.
Ben's mother, Katie Bator, is a sixth grade teacher at Spring Lake Public Schools. For her, the community support surrounding the event is invaluable.
"Ben has just an amazing personality. He loves to just kind of go with the flow. He loves music. He loves lights," Bator said. "He loves to swing. He loves to be outside. He loves to ride on his dad's tractor or the four-wheeler. So anything that's fast and loud."
KAT6 syndrome is an ultra-rare genetic disorder affecting fewer than 10,000 people globally.
"When he was born, we were seeing about 300 people that had been diagnosed globally with KAT6A," Bator said.
KAT6 syndrome refers to two related genetic disorders — KAT6A and KAT6B — caused by mutations in either the KAT6A or KAT6B genes. The condition presents across a wide spectrum.
"You may see some people who they walk and talk and they look normal, and then you see some children or adults who are completely nonverbal, have to be tube-fed," Bator said. "We're fortunate with Ben. He has the appetite of like a grown man. He loves to eat."
People with KAT6 syndrome can also experience global developmental delays, gastrointestinal complications, and sleep challenges.
"GI issues is probably one of our scariest concerns in the community, especially when someone can't communicate verbally to tell you if they're having pains. Bowel obstructions can become very common," Bator said.
As a member of the KAT6 Foundation, Bator has worked to raise awareness and fund research since Ben's diagnosis. She said the foundation currently has 13 active research projects and recently opened its first clinic at Boston Children's Hospital.
"Really just to find ways to help our individuals with KAT6 to thrive," Bator said. "Studying their cells and what makes them healthy and how can we continue to have them grow and develop?"
Friday's KATwalk is part of a broader international fundraising effort. Families in Canada, Spain, and the United States are hosting walks this year, with a collective goal of $175,000. Bator said the effort is already more than halfway to that target.
"Team Benjamin, this is the fifth year in a row that we've done a walk, and our team alone has raised over $100,000 in the last five years," Bator said.
Students can purchase a KATwalk shirt for $15 during all lunch hours this week. The school's Peer Connect elective class is also hosting a can drive this week, with all proceeds going directly to the KAT6 Foundation.
The spirit week and walk are organized in part by Peer Connect, a new elective introduced this year that brings together students with and without intellectual disabilities.
"With each trimester, they are responsible for a whole school engagement activity, a fundraising activity, as well as youth leadership. And they are knocking it out of the park with the Kat6 Walk," said Ashley Reynolds, a special education teacher at Spring Lake Public Schools. "They have come up with ideas for the Inclusion Spirit Week — today was day one of our can drive, and we are well over $120 worth of cans."
Spring Lake's district joined the Special Olympics Unified Champion School program three years ago. Reynolds said the program is built around three pillars.
"Youth leadership, whole school engagement, and unified sports. So really, the whole program just celebrates inclusion and everybody's differences and just shows that everybody belongs," Reynolds said.
Spring Lake Intermediate and Middle School Principal Jon Fitzpatrick said inclusion is woven into the school's everyday culture — not just reserved for special events.
"For us, this is a state of being. Our staff that support students with needs are one facet, but really it lies on the shoulders of the entire staff and our entire student body," Fitzpatrick said. "We look at it as celebrating everybody's strengths, and it's just commonplace. Throughout the month of September, yes, there's some activities, there's some special events, but it's to engage the culture of our building."
That culture of inclusion has opened doors for the Bator family personally.
"In 2018, our superintendent Dennis Furton came to me and he said, Katie, our district is going to open an SXI program, which is special ed severely impaired, at Holmes Elementary, and Benjamin will be able to be a Laker," Bator said.
This year, the connection became even more personal — Ben is now in sixth grade and in his mother's class.
"He's able to be in my homeroom class for inclusion. It's pretty neat to have your own kid in your class, and then I tell him, you better behave yourself because you got to go home with your teacher," Bator joked.
For Bator, watching Ben participate in the community has meant everything.
"When you're first having a child, you have all these dreams for your child, and one of them was playing sports. And last year, Benjamin participated in our Special Olympics Inclusion Unified Club, and he was the goalie with another one of his buddies for a soccer game. And, you know, I thought in that moment, like, he is playing sports, and he's changing a lot of lives," Bator said.
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