Madde Zimmermann decorates cookies as her mom watches in their Central Park home. Front Porch photo by Christie Gosch

To look at seven-year-old Madde Zimmermann, as she giggles and piles a thick layer of frosting on a Christmas cookie, there’s little evidence of the long, complicated medical odyssey that she’s endured. Born weighing just one pound, six ounces, Madde spent the first 102 days of her life in the hospital. Then at five months, doctors discovered that Madde suffered from pulmonary vein stenosis—a disease that until recently was considered fatal. “It was a shock of a diagnosis,” says Madde’s mom Jackie. “In the beginning, the doctors didn’t share many statements of hope because they just don’t know a lot about this disease,” says Jackie. Her husband Mike adds, “Doctors are learning as we go along. This was a disease that doctors didn’t start treating until recently.”

Dr. Jenny Zablah at Children’s Hospital Colorado is Madde’s doctor. “It used to be considered that there was no fix for this, but we have been proving that survival is getting better and better,” says Zablah. In fact, Children’s Hospital has become one of the leading centers for treating this rare disease, in which the veins that carry blood from the lungs to the heart are too narrow.

Dr. Zablah and her team are currently treating 90 children from seven different states. “We really focus on early detection and then we try to get procedures streamlined and done in a very timely manner,” says Zablah. The procedures include everything from cardiac catheterization, stent placement, open-heart surgery, drug therapy, and radiation.

Mike estimates that Madde has had 15 procedures, including open-heart surgery, and has been on a variety of medications. For many years, she was going in for treatments every three to six months, but she hasn’t had to go into the hospital for over a year now. That’s great news, says Mike. “But we’re not out of the woods.”

Dr. Zablah says Madde and her parents have been an inspiration to the other families who are dealing with this disease. Children’s Hospital hosted a picnic in Central Park for many of those families last summer. It was a chance for parents to talk, and for the kids to be kids, playing on a playground. “Madde is very good about talking about what she’s been through and she makes other kids feel immediately comfortable,” says Jackie.

For her part, Madde seems relentlessly upbeat, asking her mom not to cry during the interview and proudly showing off a school project about herself. “My favorite color is pink. My favorite school subject is math, I wish I had a dog, and I want to be a vet when I grow up,” Madde says with a big smile.