Cedar Heights twins wage fight against cystic fibrosis

Sixth graders Maren and Berne Van Denison have met with many health professionals as they address their needs in fighting cystic fibrosis.

Wake up. Take medication. Eat breakfast. Do treatment. Go to school. Take meds. Go home. Do treatment. Go to practice. Take meds. Eat Dinner. Take meds. Go to sleep.

This is the normal day-to-day schedule for sixth graders Maren and Berne VanDenison. These sixth graders were diagnosed with having a one in four chance of having the disease Cystic Fibrosis at birth. It is very different because  both of the twins have the disorder, making life easier and harder at the same time for their parents Stacy Van Gorp and Chris Denison.

Maren and Berne are one of the 30,000 people living with Cystic fibrosis in the United States alone. One in 31 Americans are symptomless carriers of the disease.

“When I was pregnant with the twins, I found out I was a CF carrier. I was shocked. No one in my extended family had CF. In fact, I’d never known anyone with CF,” said Van Gorp on Fighting Twins Facebook page.

Cystic Fibrosis is a genetic disease that is caused by a mutation on the seventh chromosome.

“This hereditary disease affects the exocrine glands. It causes the production of abnormally thick mucus, leading to the blockage of the pancreatic ducts, intestines and bronchi and often resulting in respiratory infection,” said Carrie K. Barker, clinical assistant professor of pediatrics – allergy, immunology and pulmonary at the University of Iowa Children’s Hospital. As of right now, there is not a cure for CF.

The Cystic Fibrosis foundation was founded by parents in 1955 to advance understanding of the disease and the treatments with an overall goal to one day find a cure.

According to the Cystic Fibrosis Foundation, “Our ongoing research is focused on developing new and effective treatments to improve key symptoms of the disease, including antibiotics and anti-inflammatories to address CF lung disease and nutritional strategies to help people with CF of all ages stay healthy and thrive.”

To help the research of this disorder, every year the Cystic Fibrosis foundation holds “Walk for a Cure” in the Cedar Valley area. This walk is to raise money for the foundation and celebrate another year of life for these kids.

Maren and Berne, once called “Team Twinkie”, now “The Fighting Twins,” have raised upward of $15,215 this year alone. This money is raised through donations through the walk and the community. The team is currently in the number one spot for money raised this year, compared to all the other “teams” in the area.

The twins, now 12 years old, are finishing up their last year of elementary school and are getting ready to take on Peet Junior High. “I am really excited to start at Peet,” Berne said.

Dealing with school and treatment has never been an easy task for the twins. Between Iowa City treatments, as well as sports and balancing school, their daily lives can seem like a struggle.

Their principal, Brian Ortman, said he is inspired by the responsibility of the twins. “I have been very impressed with their knowledge of Cystic Fibrosis.  Each year they meet with their teachers to share what Cystic Fibrosis is and how it impacts them. The meeting is led by the two of them. They are both so independent and have such a good understanding of the disease that the staff is involved very little. They are both very responsible too. When they do need to be gone, they communicate with their teachers to ensure that they get their work made up. They are an absolute pleasure to have as students,” Ortman said.

Berne admits his secret to keeping up with school work is that “when we are gone, I don’t think the teachers always give us all of the school work,” he said with a smile.

On top of school, it is very important for the twins to stay active. “By (staying) active, our doctors want to do everything that gets their heart pumping and lungs working. These types of activities can help keep the airways more open, longer,” Denison, their father, said. They are involved in many sports such as soccer, hockey, dance, T-ball, flag football and track. Maren also does band, despite her 80% percent lung capacity.

Maren and Berne also have to eat twice as many calories as other kids their age. “Many people with cystic fibrosis need additional calories. Berne needs about twice as many calories every day as a typical kid. Why? In Cystic Fibrosis, many people have a damaged pancreas that does not produce the enzymes required to help digest food. People with CF take medicine to replace the enzymes, but the medicine isn’t perfect, so, they need extra calories so that they can absorb enough to stay strong and healthy,” Van Gorp wrote on their Facebook account, The Fighting Twins.

Maren has had a constant battle with weight gain since she was born just 12 years ago at four pounds. When she was just three years old, they made the decision for her to receive a feeding tube. This pumped in about 1,200 calories while she was asleep, keeping her at a healthy weight.

One thing that they always used as an encouragement for the kids to eat was ice cream for breakfast. They needed as much calories and fat as they could get, and ice cream was the perfect thing for their bodies to consume. Now a bit older, Berne drinks an entire bottle of chocolate milk every day at school, but Maren is not yet convinced.

Berne has had struggles related to his digestive system. Cystic Fibrosis not only affects the lungs, it affects most functions of the body. There are different side effects that come with the disease, and for Berne it has been with digestion.

When he was only an infant, he received multiple surgeries to help him have as close to a healthy digestive track as possible. Medicine also helps with smoother digestion along with taking enzymes with meals since his body cannot produce an adequate amount on its own.

The twins do not know what their future holds, but they are looking forward to the upcoming summer. “I am excited to go to Disney this summer and summer camp,” Maren said.

Heath is always a concern for the family, but constant positivity and support from family and friends help keep them on their feet, along with ice cream for breakfast.

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