When Jemma and Joey met as college students at Kansas State University, they could never have imagined how their love story would one day intertwine with a rare genetic disease. Back then, life was simple—late nights working on projects, planning student government events, and discovering how easily they fit together. They started dating in October 2008, got engaged in March 2013, and went on to get married and start a family grounded in the kind of devotion that grows stronger through every challenge.
Their home today is full of the sounds of childhood—they have three daughters, Samantha, Naomi, and Juliette. While each girl is unique in their own right—Samantha, a black-and-white eldest daughter with a passion for music and reading, and Naomi, the wild-card middle child fascinated with makeup and the outdoors— at just four years old, Juliette is the rarest among them. 
Just over a year ago, Juliette was diagnosed with Sanfilippo syndrome, or MPS III, a rare and progressive genetic disease affecting approximately 1 in every 70,000 children born in the U.S. Despite her diagnosis, her parents note that her spirit shines brightly.
“She never really gets upset,” said Jemma. “She’s just a really happy kid.”
Juliette’s parents first began to notice that something was different about her when she failed her newborn hearing screening. By her first birthday, doctors confirmed mild hearing loss. With early intervention and the help of their local school district, Juliette began receiving therapies and developmental support. But as she grew, progress seemed to slow.
Around that same time, a friend from church sent Jemma an article about Sanfilippo syndrome. “I remember reading it and knowing that’s what she had,” said Joey.
“I think I knew, too,” added Jemma. “I just didn’t want to believe it.”
A day before Juliette’s third birthday, the results confirmed their suspicion—Sanfilippo syndrome. For Jemma and Joey, the diagnosis was both heartbreak and a turning point.
Since then, life has been a delicate balance of routines and unpredictability. Juliette attends preschool, supported by a one-on-one aide who understands MPS and the unique needs that come with it, and the family works hard to balance the unpredictable future ahead.
“Juliette used to have a limited vocabulary, and she’d get visibly excited when I got home from work in the afternoon,” said Joey. “About six months ago, though, that all started to change. She’s non-verbal now, and very impulsive.”
“She could walk out in front of a car, and you could yell at her to ‘stop!’ and she wouldn’t,” added Jemma. “There’s very little comprehension.”
The ups and downs have been hard on the family, especially Samantha and Naomi.
“We’ve explained it to them, and they know she’s not like other kids,” Jemma said. “They get frustrated at times because they don’t always understand why Juliette acts a certain way, or why we have to travel because of her. They love her, but when they hug her or try to interact with her, she doesn’t seem to notice much.”
Even amid the challenges, though, Jemma holds tightly to hope. She follows research updates closely, encouraged by the progress made through gene therapy and treatment advancements for other rare diseases. “We know the science is there,” she says. “We just need it to reach families like ours—to give Juliette and children like her a chance at a longer, fuller life.”
What began as a college romance has grown into a partnership defined by purpose—a shared mission to fight for Juliette’s future, and a future for all children living with Sanfilippo syndrome.
