Eureka Family, Community Prepare to Celebrate Inaugural ‘Believe in Gianna Day’

Nov. 13 is Gianna Wacker’s birthday.

It’s always a special occasion for the Eureka High sophomore and her family, but this year – and in years to come – the day will take on much more significance to those outside of the Wackers and their friends.

Nov. 13 is now “Believe in Gianna Day” in the state of Missouri. State Representative Holly Jones introduced House Bill 604, to officially recognize Nov. 13 as “Believe in Gianna Day,” in 2024, and Governor Mike Kehoe signed it into law over the summer as part of Senate Bill 348.

Those who know Gianna already recognize how unique she is and what a difference she makes in people’s lives. Now, her story will have the opportunity to have an even greater impact.

“G's a unicorn,” said her mother, Theresa. “She loves hard, loves her friends and family, laughs a lot. She's a special kid, a special human. Very unique. She’s moving mountains in this world.”

Gianna was born with Sanfilippo syndrome, a lifelong genetic disease that creates issues with a body’s ability to break down sugar molecules called mucopolysaccharides, or MPS. These molecules build up in the person’s body, which leads to damage of the central nervous system and other organs.

Sanfilippo is extremely rare, affecting around 1 in 70,000 newborns.

“The basic explanation is it's compared to Alzheimer's in children,” said Jason, Gianna’s father. “It’s a slow decline: language, speech, movement. Her memory, it gets harder to remember things day-to-day.”

“It causes kids to lose the skills they once had,” Theresa added.

Gianna’s parents started noticing problems early in elementary school. She was having behavioral issues, and her three younger siblings were gradually starting to surpass her developmentally, physically, cognitively and emotionally.

The Wackers visited a number of specialists over more than six years before a Washington University physician zeroed in on the cause. Gianna’s diagnosis day was June 15, 2021.

“It kind of floored us for a while. That was a long few months,” Jason said. “There’s a saying that really hits a nail on the head: ‘You're only as happy as your sickest child.’ So it kind of brought Theresa and I down, devastated us. That knocked us down, and then we came back.”

Shortly after Gianna’s diagnosis, the family started raising money for the Cure Sanfilippo Foundation and started its own entity: Believe in Gianna. Their goal is to raise funds and awareness to go toward research into treatment and – hopefully – a cure for Sanfilippo.

The logo for the organization is the word “Believe,” written in Gianna’s handwriting.

“I want to say that her Believe signs are in 33 states so far, which I think is pretty cool,” Theresa said. “We have purple ones up at the high school, LaSalle Springs has Believe signs everywhere within the school. I love that people will see the ‘Believe’ and be like, ‘That's Gianna's writing. That’s Believe in G.’”

Gianna is currently a participant in a clinical trial at the University of Iowa. Every week, Theresa drives her four hours each way for treatment.

She is already making her impact felt in Iowa City. The Hawkeyes football team signed a pair of Nikes for Gianna – “She is obsessed with Nikes,” Theresa said, with a laugh – and she was a special guest at an Iowa women’s soccer match. “Believe” signs are starting to pop up at more and more businesses in Iowa City.

“For this little town of Eureka, to have a girl that's inspiring so many, it is incredible,” Wacker said. “Holly said it best: It is a movement.”

Rep. Jones is a longtime family friend of the Wackers. She remembers the conversations with Theresa and Jason over the years as their concerns over Gianna’s condition grew and, eventually, a tear-filled talk with Theresa once they received the Sanfilippo diagnosis.

She wanted to find a way to both honor Gianna and bring attention to a rare disease that not many people know about.

Now everyone can celebrate “Believe in Gianna Day.”

“In the legislature, we take a lot of really difficult votes that affect our state,” Rep. Jones said. “But this wasn't hard. It was something feel-good. It was something that I could do for constituents that would put smiles on people's faces. It was absolutely an honor for me, and if I never did anything else to be remembered for, I want to be remembered as going to bat for Gianna. She's got my heart, for sure.”

Theresa, a Eureka High graduate, said it has been inspiring to see how the community has rallied around Gianna and her family.

From donating to the foundation to displaying “Believe” signs around town to helping out at home when Theresa and Gianna are in Iowa for treatment, many hands have played a part in lifting up the Wackers.

Gianna’s siblings, too, have played very important roles: from helping their mom administer Gianna’s medicine, taking turns traveling to Iowa with Gianna for support for all her appointments and helping comfort her when she upset to, in her brother Luke’s case, testifying about his sister in front of legislators at the Missouri State Capitol.

“Luke rode the bus with his sister for three years at LaSalle and sat next to her,” Theresa said. “This is middle school years for him, and he sat with her so she'd feel safe. It's definitely impacted the other three children growing up because this isn't a normal family dynamic.

"She's everybody's biggest cheerleader, which I think is awesome because everybody here in this town is her biggest cheerleader, and they're all going above and beyond for her. This community has been incredible. Her teachers, her staff, her paraprofessionals, everybody at all the schools have been very accommodating and included her in a lot of things. We live in the best little town in America, I'm telling you right now. Wouldn’t want to live anywhere else.”

This Nov. 13 is a time to wear purple, raise awareness and celebrate a Rockwood student whose personality and story are changing lives around the country.

And, most of all, it’s a time to Believe in Gianna.

“She’s changed my life, I know that,” Jason said. “Every person has a purpose in this life. Every soul in this world has a purpose for being here. No matter how long or short that is, they make an impact.”

“And she's making a huge impact right now,” Theresa added.