Cedar Falls twins advocate for hospital that saved them

July 10, 2016 GMT

CEDAR FALLS, Iowa (AP) — The two have been through a lot in their lives — long hospital stays, hundreds of regular medications and time getting therapy treatments.

The twins from Cedar Falls also learned how to speak eloquently about their cystic fibrosis, and just came back from speaking to their United States senators and congressmen about it in Washington, D.C.

“We basically told them the University of Iowa (Children’s) Hospital is important to us, ’cause they saved our lives multiple times,” said Maren Denison.

“I stayed for 58 days, Maren for 63” when the twins were born at the Children’s Hospital, said Maren’s brother, Berne Denison. They have had other surgeries and hospital stays since then.

Their disease — cystic fibrosis — is a rare, inherited disorder that damages the lungs and digestive system. Treatment eases the symptoms, but there is no cure.

The Waterloo-Cedar Falls Courier (http://bit.ly/29yROEU ) reports that Maren and Berne each take hundreds of medications and have hundreds of hours of therapy each week to keep their lungs and digestive systems clear.

Still, they occasionally have to go back into the hospital. Maren remembers staying in the hospital for lung problems when she was about 4 years old.

Berne learned how to ride a tricycle for the first time in a hospital at age 3, and said the last time he stayed it was for 28 days when he was 8.

But spending time with them, it’s easy to forget those things: Once there’s a break in telling their story, Berne and Maren fidget and jockey with each other on the couch in their Cedar Falls living room, culminating in Berne sitting on his twin sister and getting the side-eye from their dad, Chris Denison.

They’re still only 11 years old, after all.

That youthful energy helped June 21 and 22 as the soon-to-be-sixth-graders and their parents traveled to Washington, D.C., to lobby on behalf of the University of Iowa Children’s Hospital. It was part of the Speak Now for Kids family advocacy day.

The twins ran around the U.S. Capitol and met with U.S. Sen. Joni Ernst, U.S. Reps. Rod Blum and Dave Loebsack and a representative from U.S. Sen. Chuck Grassley’s office.

Blum was Maren’s favorite.

“He seemed excited and said he would come to our school and take us out,” she said.

Chris Denison and Stacy Van Gorp, the twins’ parents, are on the Children’s Hospital family advisory board and said they were advocating for more money for the residency program in pediatrics, more money for research into a cure for cystic fibrosis, and money to fund telemedicine programs in rural areas.

“If it’s meaningful to us, we’re on board no matter what,” Denison said.

The Denison family is also putting their money where their mouth is: They host a golf tournament and encourage individuals to use events they’re already in, such as RAGBRAI and the Sturgis Falls 5K, to raise money for cystic fibrosis research.

The twins also have their own businesses — Berne washes cars, and Maren owns Purse Pal — in order to raise funds for research.

Of course, that’s when they’re not busy participating in soccer, hockey, piano, dance, band, Lego League and running around with their friends — in other words, being regular kids. They credit the Children’s Hospital for giving them the chance to do so.

“Our doctors are really great,” Maren said.


Information from: Waterloo-Cedar Falls Courier, http://www.wcfcourier.com