Believe-- a seven-letter word that means far more than its dictionary definition for the Wackers, a family of six from Eureka, Missouri. In the four and half years since their eldest daughter Gianna was diagnosed with Sanfilippo syndrome, a terminal illness, “Believe” has become their family mantra — a testament of hope and joy that has spread beyond their home in Missouri and into the University of Iowa Clinical Research Unit.  

For the six and a half years before her diagnosis, Gianna’s parents, Jason and Theresa, searched for answers. During that time, they noticed changes in Gianna and felt that something wasn’t quite right. Gianna’s three younger siblings were surpassing Gianna developmentally, physically, and emotionally. After advocating for their daughter and working with doctors to find an answer, Gianna was diagnosed with Sanfilippo syndrome.   

At first, Gianna's family was relieved — at last, there was an answer. But when the doctor warned them not to Google her diagnosis, their relief turned to panic. Online, they read words like “terminal,” “life expectancy in the late teens,” and “no cure.”  

Rare genetic condition causes ‘childhood dementia’ 

Sanfilippo syndrome — an inherited neurodegenerative disease that causes progressive damage to the central nervous system — affects about one in every 70,000 births, according to the Cure Sanfilippo Foundation. Sometimes known as childhood dementia, this rare condition can cause speech and language delay, intellectual disability, sleep issues, spasticity, and seizures. Life expectancy is typically in the late teens. 

However, since the day of her diagnosis, Gianna has been defying the odds. 

“We call her a unicorn,” her mom explains. “She can still walk and talk, and that’s a miracle.” 

At 16, Gianna is an older patient with Sanfilippo syndrome, and her ability to still walk and speak is uncommon. Throughout their journey, Gianna’s family has focused on having hope and raising awareness for Sanfilippo syndrome.

“Gianna goes to doctors who have never even treated someone with Sanfilippo syndrome, and don’t even know what it is,” her mom shares.   

Clinical Research Unit offers new option  

Earlier this year, another Sanfilippo family told Theresa Wacker about a clinical trial at UI Health Care. Theresa immediately contacted the trial team to find out if Gianna was eligible to participate. 

“She’s 16, full of life, just give her a chance,” Wacker wrote.  

The UI Health Care team determined that Gianna was a good candidate for the trial, and now she and a family member make the four hour drive each way from Eureka, Missouri, to Iowa City, Iowa, once a week.  

The Clinical Research Unit (CRU), situated on UI Health Care’s university campus, is a full-service clinic dedicated to clinical research. The CRU provides physical space for clinical research as well as the resources and staff to conduct studies. It is home to more than 300 active clinical studies, and one of only four sites in the country offering the trial that Gianna is participating in. 

In the weeks the family has visited the University of Iowa; they have fallen in love with the CRU staff, the doctors, the nurses, and the city. 

“Iowa has a special place in our hearts,” says Theresa Wacker. “For Gianna, the schedule change from her normal and missing school is difficult, but the staff at the CRU and around the hospital have made it easier; everyone knows us, it made it an easy transition for the consistency.”

Gianna and her family have made an impact on the CRU staff, as well.

“Gianna and her family are unforgettable for their positivity and laughter. They approach every visit with hope and love—not only for Gianna, but for all children affected by Sanfilippo syndrome,” says Holly Clubb, BSN, RN, CPN, clinical research nurse and pediatric educator.

Future-focused 

Refusing to be defined by the prognosis, the Wacker family turned their focus outward and committed to raising awareness and funds for Sanfilippo syndrome research. They began creating signs with Gianna’s slogan, “BeLieve,” written in her own handwriting. 

“She wrote the word believe, and it brought so much goodness and joy,” her mom beams. 

These signs, that now appear in nearly 40 states around the country, share the family's message of hope, joy, and awareness. To learn more, visit their family Facebook page.  

“Working with the Wacker family is an honor,” Clubb says. “They work tirelessly to raise awareness for Sanfilippo syndrome, and being able to support them in even small ways feels incredibly rewarding. Their commitment reminds me daily why I chose this profession,” Clubb says.    

In an example of how the care provided by the CRU team goes far beyond their clinical expertise, Clubb leaned on her personal connection with UI football player Kaden Wetjen to secure a pair of Nike shoes for Gianna signed by Wetjen and his teammates from the Iowa Football team. Gianna was also the guest of honor at a recent Iowa Women’s Soccer game. 

To the nurses in the CRU, Gianna’s presence is a constant reminder of why their work matters. 

 “Even on long or challenging days, she radiates joy and makes everyone around her feel welcome,” Clubb says. “Knowing I am contributing, even in a small way, to research that could improve her future, and the lives of other children like her, is profoundly meaningful.”   

As Gianna continues to brighten the University of Iowa’s CRU each week, her circle of family, friends, and newfound Iowa supporters continue to embrace her mantra: Believe.