June 30, 2012, marked a special day for Marissa Fenske’s family. It was exactly one year to the day from her last surgery.
That was her 30th operation.
Marissa is 3 years old.
The Fenskes celebrated by watching the June 30 Rhythm & Booms fireworks show at a special event hosted by the University of Wisconsin-Extension’s Pyle Center and the American Family Children’s Hospital. The “booms” from Madison’s Warner Park staging area across Lake Mendota were muted, but the view of the fireworks was not.
“For families like ours who have a child in a wheelchair and children who cannot tolerate crowds or loud noises, an event like this makes coming out to enjoy something as basic as the fireworks possible,” Shannon Fenske says.
Shannon and Kevin Fenske of Reeseville adopted Marissa from New Orleans in 2009 and now have four children under the age of 7. Marissa uses a pediatric wheelchair, usually pushed by her mother, and faces challenges including cerebral palsy, West Syndrome, global developmental delay and cortical blindness.
Patients could watch the fireworks show from outdoor seating on the Pyle Center rooftop or balcony or from indoor seating in the Alumni Lounge, all accessible and providing plenty of space for medical equipment.
Marissa’s family was among 37 patient families who celebrated Rhythm & Booms at the lakefront Pyle Center. They could watch the fireworks show from the Pyle Center rooftop or balcony or from inside the Alumni Lounge, with all areas accessible and providing plenty of space for medical equipment.
The center and hospital staff planned an event the whole family could enjoy, with a visit by UW-Madison mascot Bucky Badger and food including Oscar Mayer hot dogs, Schoep’s ice cream and freshly baked University Club cookies.
“It’s great that the hospital takes the time to put together something like this for the families, not just the patients, the family members who sometimes get a little bit left behind and a little bit lost when the sick children are getting taken care of,” Shannon says.
Sheri Rice, marketing director for the UW-Extension Conference Centers, got the idea for hosting American Family Children’s Hospital patients from her own experience with a temporary disability, the result of foot surgery a year earlier.
“For me, it really opened my eyes to what it would be like to have a disability or not be able to just run around a park or have the stamina to do that,” she says.
The Pyle and Lowell Centers are part of the UW-Extension Conference Centers, which provide meeting spaces and lodging in Madison.
The use of the Pyle Center for American Family Children’s Hospital Rhythm & Booms event was “just kind of serendipity,” she says. “It just came together.”
Patients and their families were grateful for the location and generosity of the UW-Extension Pyle Center staff, volunteers and donors.
“Thank you is kind of an understatement, but it really means a lot to us,” Shannon says.
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