Poignant memories lead to help and hope for others

Anne Juhlmann has faced a parent's worst nightmare. Twice.

Juhlmann and her husband lost two sons to mitochondrial disease, a progressive, incurable illness that slowly compromises or destroys a body's organs and systems. Sam was just 7 years old when he died in March 2005. His older brother, Zach, was 15 when he died in November 2007. Both were treated at Children's Hospital of Wisconsin, where Juhlmann was working as a Family Program coordinator in the Daniel M. Soref Family Resource Center.

Today, Juhlmann continues in that position and also works as a pediatric nurse case
manager/educator for the Special Needs Program. Her dual role is inspired by her sons, who taught her that we can – and should – make life easier for kids and their families facing long-term illness, chronic conditions or even death.

"Zach and Sam fought so hard and so long to live," Juhlmann said. "They spent months here at the hospital and always tried to make the best of everything. I wouldn't be honoring them if I didn't stay positive. I try to take their energy and spirit and use it to help others – our patients and families, and my daughters, too." Her daughters Brittany, 22, and Abby, 16, also have shown symptoms of mitochondrial disease, which is genetically inherited. They are healthy and thriving students, one in college and the other in high school.

Like her daughters, Juhlmann has a focus on education but with a different spin. Based on her years of patient family experience, Juhlmann created an education program for the hospital's pediatric residents. Known as TEAM (Together Everyone Achieves More) training, the program helps young physicians understand how to best treat patients with special health care needs and assist their families.

TEAM training includes course work, which Juhlmann created, along with home and
clinic visits with a focus on the challenges patients face in their own surroundings. Initially, the program was a requirement for third-year residents. It has expanded to residents in their first and second years as well. For her efforts, Juhlmann received the Pediatric House Staff Outstanding Educator Award in 2007 and 2008.

"When I spent all that time in the hospital with my boys, we got to know a lot of the residents," Juhlmann explained. "At times, they seemed insensitive to our nonmedical needs and problems. But these were wonderful physicians, and they weren't
insensitive people. They just didn't know what we were going through. I wanted
to help them understand.

"The staff members here have always asked, 'What can we do to make a difference? How can we help this child live at home and give him the best quality of life?' I think the training helps with that."

She also helps hospital staff understand what it's like to deal with unimaginable heartache and loss. "Horrible things can happen, but there are unexpected joys in those moments," Juhlmann said. "I have wonderful reminders of my boys all over the hospital. There's a hallway where Zach and Sam threw balls for physical therapy. Their physical therapist was always reminding them not to hit the ceiling. That's all it took – they were determined to dent those ceiling tiles. And they did. When I pass that hallway, I see those marks and I can't help but smile."

She also remembers the staff who tried so hard to help her family cope. They showed her that caring for a family goes far beyond medical treatments.

"I'd like people who work here to know that we're all important pieces of a whole,
no matter what we do in our jobs. If you come in to clean my son's room and you say, 'Your child is so beautiful,' that makes such a difference to me. I feel your warmth and compassion."

Juhlman's personal experience guides her every day, whether she's aiding a family in the family resource center or instructing pediatric residents. "I can be an important piece of the whole for someone else," she said. "I can be the one who makes a difference."