Those with spina bifida in Illinois push for recognition, awareness
CHICAGO (CBS) – A small but mighty organization will celebrate a huge win on Wednesday.
The nonprofit recently formed a legislative action committee to advocate for people living with spina bifida.
CBS 2's Lauren Victory explained why Oct. 25 will be an extra special day for them and all of Illinois.
CBS 2's equipment nearly broke from Aggie Rupnick's excitement. An adaptive playground helped her and her parents do fun things that other families do.
"She loves hanging out with he friends," said Becky Rupnick, Aggie's mother.
"And my dog!" Aggie added, referring to Einstein whom her called her "absolute favorite."
The happy-go-lucky second grader is learning how to walk with a cane after a recent spine surgery, one of 12 operations for Aggie so far. Her mobility is limited because she has spina bifida.
Aggie's parents initially didn't know much about the birth defect.
Becky recalled that while pregnant with her daughter, a doctor told them, "We should expect no quality of life from Aggie and that he suggested termination."
Matt Larsen, with the Illinois Spina Bifida Association, answered the family's panicked call to provide them educational materials and resources.
"There are many people that don't know someone with spina bifida," he said.
Larsen knows someone, so he linked the Rupnicks to that network with more than 1,000 people in Illinois. It's a whole community living and thriving with spina bifida.
"We were given hope that we previously had not known about," Becky said.
Now, she hopes the greater public will be more conscious of Aggie's condition.
"I feel like it's giving us a voice," Becky said. "Our needs, our community is finally being heard."
Becky is talking about a recent win documented on a plaque Larsen showed CBS 2.
"Individuals with spina bifida live well into adulthood," Larsen said, reading from the plaque.
It's filled with facts and a first-ever declaration in Illinois that Oct. 25, 2023, is "Spina Bifida Awareness Day."
Larsen and Rupnick shared the news at a recent spina bifida community picnic at Shriners Children's Hospital. The medical partner specifically hosts spina bifida clinic days for kids.
"A lot of the times, you may see orthopedic issues, so foot deformities, hip dysplasia, scoliosis, which is the curve of the spine," said Kat Benson, a nurse practitioner at Shriners.
Victory: "Where does research stand with spina bifida? Is there a cure?"
Benson: "There is not a cure."
It's another reason why the proclamation of "Illinois Spina Bifida Awareness Day" means so much.
"Getting the attention that we need so children like Aggie and adults that are living into adulthood get the services and the care that they need to continue to live their lives," Becky said.
They're encouraged and excited to keep the ball rolling.
Becky helped create the Illinois Spina Bifida Association's legislative advocacy committee that was able to secure the state's first-ever spina bifida awareness day.
The group is now focused on improving insurance coverage. Another mission will be to make it easier for parents of children with disabilities to receive multiple handicap placards so they don't need to worry about transferring one between cars.
