Like many 7-year-olds, Emma Broeniman of Appleton, Wisconsin, loves art projects and Hershey bars. But unlike many of her peers, Emma has already undergone 13 surgeries and is on her second chemotherapy treatment.
Broeniman's health complications stem from Neurofibromatosis type 1 (NF-1), a genetic disorder that affects the body's ability to control cell pision. NF-1 is caused by the mutation of a gene on chromosome 17. Although this mutation is often silent and leads to minimal issues in most patients, some people experience life-threatening tumor growth, especially along nerves. It can also affect the growth of skin and nervous tissue and cause other complications, such as café-au-lait spots, blindness, brain tumors and pseudarthrosis of the tibia which can lead to amputation.
“My mother and I both have NF-1, but we’ve never had any issues,” says Emma’s mother, Amie Broeniman. “But Emma had a bowed leg, which broke when she was 15 months old. We soon learned that Emma had pseudarthrosis of the tibia, meaning that she would face years of surgeries and possible amputation of her leg by age 8.”
The Broenimans’ journey then moved two hours south to Madison, where Emma was seen by Kenneth Noonan, MD, a UW Health pediatric orthopedic surgeon at the UW’s American Family Children’s Hospital (AFCH).
“Dr. Noonan walked in the room, sat down and looked us in the face and said, ‘Emma’s going to have a normal life,’ ” Amie says. “She’s not going to be a track star but she’s going to have a normal life. He really reassured us.”
"Emma and her family have faced her disease with incredible resilience," says Noonan. "Her disease has manifested itself in many ways. She is a strong little girl."
After experiencing debilitating headaches for approximately six months, Emma was diagnosed at age 5 with a pale optic nerve. An MRI was scheduled and within 24 hours of the results, Emma was admitted to AFCH with a brain tumor and hydrocephalus. Emma had brain surgery two days later and since then has had nine more brain surgeries, mainly to repair shunts.
“I can’t say enough good things about how well American Family Children’s Hospital has taken care of Emma,” says Amie. “Everybody knows us. I like the primary nurse, and that we have the same nurse every time we’re in the hospital.”
The Broeniman family also appreciates the help they have received from the social workers and other staff members.
“The social workers have worked very closely with us to make sure that we get the help we need financially. Having a child going through chemotherapy can ruin you. We drive two hours each way weekly so they help to take care of us,” says Amie.
The Broeniman family, especially Emma, truly enjoys the facility and staff in Madison.
“Emma has this personality we call ‘Hospital Emma,’ ” says Amie. “She gets happier the closer we get to the hospital, the voice goes up an octave, she gets excited to see the staff.”
Emma is currently undergoing chemotherapy for a brain tumor and is continuing to be treated for her pseudarthrosis of the tibia. Despite the complications, Emma is thriving.
“We really believe in our doctors,” says Amie. “American Family Children’s Hospital is the best place we can be. We owe the staff there everything.”
Date Published: 08/09/2010