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June 1, 2013 / tgexp

Steve and Hope Dezember II

Steve Dezember is 31. He graduated from UGA in 2006. He was diagnosed in 2011, at the age of 28. He and Hope were already together and planning to get married. Hope is a psychologist and works primarily in low income areas. Steve’s progression has been rather rapid. At first Hope was organizing friends to come over each day to keep him company and feed him but it quickly became more than could be handled in that way. Not to mention – Hope worried constantly and decided that what she really wanted to do was to be with Steve. She recently left work to be Steve’s primary – and pretty much – sole caregiver. They have both worked tremendously hard to spread awareness – talking openly about ALS wherever they go – whether asked or not. They both love music and travel and decided to paint their car and travel to visit family, friends, and festivals this past year. Throughout the entire adventure they shared their experiences on their blog and through emails to all of us – giving us updates and tips they had picked up along the way on how to travel on a budget with ALS. They camped, stayed in teepees, slept in their car, and stayed with friends. They had an amazing adventure.
It was on this adventure that Steve made the decision that he would vent when the time came.

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Steve was recently trached due to a feeding tube issue. Liz informed us that he had no form of communication while he was in the hospital.

We sent he and Hope a Tablet Kiosk/Tobii Pceye assistive eye technology kit.

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We are inspired by the love of Hope and Steve and are grateful for the money donated to The Gleason Initiative Foundation so that we can help them communicate for years to come.

http://m.facebook.com/hope4steve?id=176860415722366&refsrc=http%3A%2F%2Fsearch.yahoo.com%2Fmobile%2Fs&_rdr

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One Comment

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  1. Molly Lyons / Jun 11 2013 5:07 pm

    Beautiful story. Thanks for the care you give to so many: through words, actions, technology. #AwesomeAintEasy but you are awesome. I love you, Auntie Moll

    Sent from my iPhone

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