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Nick Grigoriou gives software engineer Dan Miley guidance during testing.

Nick Grigoriou gives software engineer Dan Miley guidance during testing.

Nick Grigoriou is a 25-year-old man with Duchenne muscular dystrophy, a genetic disorder that causes progressive muscular degeneration and weakness.  A patient at DPH’s Pappas Rehabilitation Hospital for Children in Canton since 2012, Nick is preparing to be discharged home later this month.  Due to the progression of his disease, Nick has lost a lot of function, and even though he is still able to drive his power wheelchair and move independently, he depends upon others for help with daily living tasks.

Recently, due to limitations in his movement, Nick was no longer able to use his video gaming console – preventing him from enjoying his favorite leisure and social activity. Working with his occupational therapist Donna McCrorey, they concluded that existing adaptations would not work and so they turned to researching the internet for a solution. They found a YouTube video about “Freedom Wing,” an app which links power wheelchairs and gaming platforms but which sadly was not commercially available.

Nick and Donna would not be deterred. Donna reached out to Dan Miley, a software engineer, to use this concept to design a computer interface with even greater functionality.  Nick tried several versions, giving feedback on each iteration, until his access to his favorite video gaming platform was fully restored.  Then, Don Fredette from the Pappas Rehabilitation Engineering Department created a useful, durable enclosure for the system to make it playable wherever Nick goes.

Nick’s Xbox controller - affectionately known as "NIXBOX" - atop his new video game system. They call it “NIXBOX”

Nick’s Xbox controller – affectionately known as “NIXBOX” – atop his new video game system. 

Thanks to Nick’s own determination – and the help and dedication of Pappas staff – he is looking forward to doing what he likes most, in the place he most wants to be. Nick is going home this summer to play Xbox with his brother.

You can learn more about the Pappas Rehabilitation Hospital for Children at http://www.prhc.us/.

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health communication writer and editor

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