prader-willi syndrome (pws)
meet the
By Rebecca Wood
BRENNEMAN FAMILY B L A K E – N ATA L I E – E VA N – B E N – D R E W
Last summer, Natalie and Blake Brenneman witnessed a marvelous moment. Their 5-year-old son Evan climbed onto a bike and pedaled around a high school parking lot. Tears filled Natalie’s eyes as she witnessed her son’s first bike ride. A child’s first bike ride is an iconic occasion for any parent, but for the Brennemans the ride held additional significance. Gross motor skills have always proved challenging for Evan; riding a bike was no exception. Undeterred, Evan devoted countless hours to mastering the skill. Under the coaching of his parents and grandfather, Evan worked on pedaling, braking, and balance. When Evan finally cycled down the street, the scene was even sweeter observing the fruits of Evan’s persistence. “It was such a rewarding moment to see him moving forward on a bike,” says Natalie. “To see him set goals and work towards them is truly beautiful.”
In many ways, Evan resembles his peers. Natalie describes her son as a “cool kid” who loves all sorts of vehicles. He is partial to Lamborghinis, vowing to save up to buy this sports car for his 16th birthday. Evan lights up on playgrounds. He breaks into a big smile while swaying on a swing or climbing on play equipment. However, Evan faces many more challenges than his other classmates and friends. Evan has Prader-Willi syndrome (PWS). This rare genetic disorder encompasses a wide array of medical and development issues. One of the biggest struggles for those with PWS is appetite and hunger cues. PWS patients wrestle with constant, insatiable hunger and the lack of a “feeling full” sensation. Evan refers to this as his “special belly” and explains, “I think sometimes I’m hungry when I just ate.” Natalie adds that PWS makes food security a critical concern. Evan faces other difficulties. Changes in schedule can induce anxiety. The Brennemans mindfully talk Evan through any differences in the day.
Photo credit: Liz Kaye Photography
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14 Special Needs Living • April 2021
One of Evan’s biggest current struggles is scoliosis. Evan wears a back brace 16 hours a day to rectify spinal issues. Evan selected a purple brace thinking it would function as a cool accessory. Unfortunately, the fun color didn’t mask the discomfort. Initially, Evan wept over the pain. Now, he’s become accustomed to the brace and understands its purpose. However, challenges with the brace still persist. The Brennemans received Evan’s diagnosis shortly after his traumatic birth. Immediately after his delivery, Evan was shuttled to the NICU at IU West Hospital and then transported on to Riley Hospital. At Riley, Evan underwent a series of medical and genetic tests. Doctors finally identified PWS as causing Evan’s ailments. “He was our first baby, and we fully anticipated a healthy boy,” Natalie says. “It was a really tough time. I had never heard of PWS. Googling it can be scary, too.” Medical treatments and therapies began right away. “Learning to navigate complex medical care, therapies, medications — it was really overwhelming in the beginning,” says
