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Shelburne Free Press https://shelburnefreepress.ca/?p=15249 Export date: Sat Jul 6 23:19:30 2024 / +0000 GMT |
Benefit dance for former resident This Saturday October 17 there will be a benefit dance to help alleviate some of the financial burden that faces Mike Steven's, a former Shelburne resident, who is currently battling Batten Disease and Dystonia, two rare diseases. Dystonia is a Neurological Movement Disorder that causes muscles to contract and spasm involuntarily causing pain, tremors, twisting and other uncontrollable movements. Dystonia can affect any part of the body including the arms, legs, neck, eyelids, face or vocal cords. The cause of dystonia is not known and currently, there are no medications to prevent dystonia or slow its progression. There are, however, several treatment options that can ease some of the symptoms of dystonia. While Batten Disease is a rare fatal Neurodegenerative Disorder that begins in childhood. This genetically inherited disease causes cells to be thrown out of the balance with the build-up of proteins and fats. Over time as a result of these damages cells, person with Batten disease suffer progressive neurological impairment including seizures, visual impairment including blindness, personality and behavior changes, dementia, and loss of motor skills and the ability to walk, talk and communicate. Because of widely varying genetic mutations, the arc of Batten disease can vary tremendously for each person. Sadly, until more strides are made in research, treatments and cures, Batten results in an early death. In Mike's case these two diseases have affected his entire body making him incapable of working for the past few years. As such, he is now under care of specialists in Toronto which requires him to commute back and forth for treatments and appointments. To help with the tremendous costs associated his family and friends have decided to host a benefit dance for Mike at the Shelburne Legion. The evening will consist of a DJ, light refreshments, door prizes and a silent auction featuring a signed goalie stick from Maple Leaf Jonathon Bernier! Family member and friends are asking us to “Help us help Mike”. Tickets can be purchased at the door for $15. For more information please contact Dianne at 519 940-4190 or 519 925-8681. By Michelle Janzen |
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Post date: 2015-10-09 20:07:35 Post date GMT: 2015-10-10 00:07:35 Post modified date: 2015-10-15 21:27:46 Post modified date GMT: 2015-10-16 01:27:46 |
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