Prader- Willi Syndrome (pws) Meet the Brenneman Family - Blake, Natalie, Evan, Ben & Drew

By Rebecca Wood

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.

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.

However, Evan faces many more challenges than his other classmates and friends.

Evan faces other difficulties. Changes in schedule can induce anxiety. The Brennemans mindfully talk Evan through any differences in the day.

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 Natalie. “Delayed and missed milestones broke my heart, but like managing medical care, that has gotten easier.”

An array of dieticians and physicians — more than a dozen — treat Evan. He sees most of his doctors at Riley Hospital. Natalie refers to endocrinology as our “main squeeze.” Dr. Miller, an endocrinologist and PWS specialist at the University of Florida, oversees Evan’s care. As an added bonus with her treatment, the family pairs a trip to the beach with a visit to Dr. Miller.

Evan participates in numerous therapies. He engages in music therapy and hippotherapy at Pat’s Pals Therapy Ranch. Evan swims through the Optimist Miracle Movers.

“All of these are therapies, but they definitely feel like a lot of fun,” says Natalie.

Currently, Evan is a pre-K student at Little Quakers Academy in Plainfield. Twice a week, he attends half-day classes. Evan partakes in speech, physical, and occupational therapies at school. The Brennemans refer to his school therapists and teachers as the “dream team.”

Natalie does express some concerns about Evan’s transition to kindergarten in the fall. “I worry whether he will have the stamina for full-day kindergarten,” she says. She expressed other apprehensions about the presence of aides, therapies, and food security.

With these questions and countless others, Natalie looks to the PWS community. Since Evan’s diagnosis, the Brennemans have connected with the PWS online community and made local friendships, too. The family has found support and wisdom from others within this group.

“Connecting with others in the PWS community brought us so much relief,” says Natalie. “It was the best thing and critical for us.”

The Brennemans strive to pass this same encouragement on to others within the PWS family, specifically those who are new to the diagnosis. The family also promotes PWS research by participating in fundraising activities and awareness.

Life is full for the Brenneman family. Evan is a big brother to 1-year-old Drew and 3-year-old Ben. Natalie is expecting a fourth child in July. The busy family resides in Plainfield and enjoys visiting local spots like Hummel Park, Brightly Art Studio, and cauliflower crust pizza from Chicago’s Pizza. The

family savors neighborhood walks, weekend protein pancake breakfasts, and cooking at home.

For the Brennemans, PWS doesn’t diminish the joy found within their home. Natalie says, “I would never have chosen this path, but I’m so grateful to be on it.”

If you would like to share your personal or family story or to nominate someone else to be in an upcoming issue of Special Needs Living, email us at SpecialNeedsLivingIndy@n2pub.com.