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Children star as apos;superheroes apos; in book about ALS

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CEDAR RAPIDS, Iowa "I didn't always have ALS," Laura Kilburg reads. "I used to walk and even run.""The Wondrous World of Wren & Will" tells the story of how two "superheroes" help their father, an ALS patient, with the daily chapters of life.Kilburg battles some light nerves at the Cedar Rapids Public Library in Iowa. It’s story time on a cold Wednesday morning.The toddlers in the reading room aren’t nervous as they trudge through, the tiny socks on their tiny feet approaching Kilburg as she thumbs through a book that has defined a life full of young lives, innocence and also having to grow up too soon.“I can hear kids giggling but I can't see them anywhere,” she said early in her reading of “The Wondrous World of Wren & Will.”Kilburg’s children’s book centers on the adventures and interactions of two young children, Wren and Will, who help their father, who has ALS (amyotrophic later sclerosis), a deadly disease that remains without a cure.The book touches Kilburg’s heart as she lives with the effects of ALS every day.Her two oldest children are the “superheroes” in the book, as Wren is six and Will is five. Their father is Troy Musser, an Army veteran who served in both Iraq and Afghanistan. Doctors diagnosed Musser in October of 2011 with ALS, setting off a different path for the Mussers, then a young couple with a little girl and a son on the way.“With the diagnosis of ALS, we have a lot of negative, dark days where they were too young to remember,” recalls Laura. “But then it was kind of a moment where we wanted to put them first. For me, it was, 'What do we want them to remember?'"Troy and Laura divorced after Will’s birth, but this family has remained very close as Wren and Will come over to visit often. Laura has since remarried and is now a mother to her third child.Back in 2012, Musser showed the difficulty using his hands and fingers to tie his shoes. At that point, Troy’s voice was still strong and even where he could easily communicate through speech.In November 2014, Troy described how the disease had progressed. Breathing was a little more labored and Troy could still speak, albeit with strained effort for each syllable.“I’m just a normal person trying to live a normal life,” Troy said at the time from his wheelchair, as he still had the use of his hands and fingers.Now, in February 2017, his voice is gone – the latest element of Troy’s life that ALS has taken from him. So is any sense of mobility.While the progression of ALS varies from person to person, Troy’s muscular capacity faded first, followed by his voice. He can still breathe on his own, one of the few parts the disease has not yet claimed.Super Ws to the rescue.“Being a superhero doesn't always mean you have a magical power,” Kilburg reads to the children at the library. “It means you are willing to help others with a positive attitude. You are superheroes, Super Ws to the rescue."The plot of the book is how Wren and Will help their father with getting dressed, making breakfast and playing at the park. The main idea is that, even though dad is in a wheelchair, the children can still play with him amid assisting with his life.“I don't know what they'll remember because they don't remember the walker or the cane, really, before the wheelchair,” said Laura in an interview at Troy’s home as the children played. “I think the book will help jog their memory in the future and it may even help guide their memories."Troy can still communicate, but the effort that goes into each character takes precision – something that his broken body doesn’t always want to facilitate. His mind remains sharp as ever, a cruel reality for ALS patients with full cognitive capacities but a body that, eventually, shuts down. Troy can use Facebook to “talk” with people."There's a little camera on the computer that Troy will stare at and it calibrates his eye,” Laura explains. “The keyboard is on the screen and he'll stare at each letter like he's typing with his fingers, only he's typing with his eyes. The calibration connects the camera with his pupil so as he moves, it will find it."Musser is the visible face of ALS in Cedar Rapids, Iowa. He often attends RoughRiders hockey games and Kernels baseball games to get out of house. A sticker on the back of his wheelchair says “Ask Me About ALS,” to bring attention to the disease that changed his life forever.His voice, while silent in 2017, is not completely gone.“Before he lost his voice, he also recorded his voice, saying, "I love you" or, "How are you?" or "Hi," common phrases so he doesn't have to type out every sentence he can think of,” said Laura.That’s a little element, just hearing a loving voice, that Laura and Troy hope will stay with their children forever. The journey of the past six years has been one that would break most people. The days still are not easy, especially for Troy, as the progression of ALS gets a little deeper with each week.

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