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Archive: February, 2013

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Walk for Muscular Dystrophy Ambassador: Edmonton

Cedric-Edmonton Ambassador 2013Cedric was born on June 1st, 2010.  He lives in Edmonton with his parents, little sister Rosie and his dog Otis.  Cedric has Duchenne Muscular Dystrophy, a medical condition that causes the muscles to become weaker over time.  Cedric shares this diagnosis with his great uncle, two uncles and a cousin.  Only Cedric and his cousin are still living.  There is no cure but Cedric has been seeing a specialist at the Glenrose Hospital every year since he was 6 months old.  His parents help to stretch his calf muscles and take him swimming regularly.  He sometimes gets frustrated when his muscles can’t keep up with him.  Stairs are a challenge so he crawls up with his little sister or needs to hold someone’s hand.  When he gets tired, he trips and falls more easily.  He has trouble running as fast as other boys his age and when he tries to jump, only his heels get off the ground.

Although his body may have physical limitations, he still knows how to have fun and is a very smart boy.  At 3 ½ months old, he started attending public library programs.  He went to last year’s Car Show at Northlands Park with his parents.  He enjoyed sitting on his Dad’s lap in the drivers’ seats as they pretended to be race car drivers.  He attended an Edmonton Eskimos Football game in August of 2011.  Besides enjoying all the sights and sounds, he quickly made friends with those sitting around him, which isn’t hard to do with his good looks and cheerful personality.  He has enjoyed vacationing with his family, either in Mexico or at the family cabin in the mountains.

Cedric is also eager to help with chores around the house, like watering the plants, turning on the dishwasher and helping to load the washing machine.

He took part in last year’s Walk for Muscular Dystrophy for the first time.  Many family members and friends supported him by either helping to raise money or by attending the event too.  Last fall, he attended the Family Retreat at Camp He Ho Ha in Seba Beach.  He loved playing with the other children he met and felt very comfortable around their wheelchairs.  Cedric visited with the fire fighters during the Rooftop Campout this year and helped to lift their spirits.  He is an inspiration to us all!

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Tips and Tools for self-advocacy

ADVOCACY – “Tips and Tools”

(Adapted from the Advocacy Tool Kit published by Muscular Dystrophy Canada.)

advocacy selfThe most important thing to remember when advocating for yourself is that YOU are your BEST advocate. You may not realize it, but you are already an advocate for yourself in many ways. Have you ever felt that it was in your right to do something or receive something you need, and then gone and done something about it? Well that is advocacy.

There are many ways to advocate for yourself but below I am going to outline a few tips from the Advocacy Tool Kit created by Muscular Dystrophy Canada.

Before you begin your journey as an advocate, the incredibly important first step is to start by knowing and understanding your rights as an adult. You may have had family members/care givers/health professionals advocate on your behalf, but now that you are an adult it is important to begin the process by knowing your own rights. You will then become more responsible and in control of your own path. In addition, it is also vital to know your needs. The better you understand your specific disability, the better you can communicate the information you need to advocate. Last, but not least, effective communication is an essential skill to advocacy.

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Helen shares her story and her thanks

Hi everyone!

HelenSparkyPaulMy name is Helen Ma. I’m a twelve year old who spends most of my time with my nose stuck in a book or with my eyes glued on to my mother’s Ipad (Angry Birds is always a very pressing matter). I live with my over protective mother, my under protective father, my grandparents who answer every phone call with “my English not good” and my two younger siblings who have a lot of attitude packed into a small package. I also live with this slightly annoying, thorn at my side, pain in the butt thing called Spinal Muscular Atrophy, or SMA for those of you who are too lazy to write the full name.

SMA is a neuromuscular disorder covered under the umbrella of muscular dystrophy. Muscular dystrophy affects many people around Canada. Sure, muscular dystrophy is hard to live with but some of the best moments in my life would have never happened if I didn’t have SMA. Zip lines, ferry rides and Disney World experiences were all thanks to SMA, and the people who help support those who have it.

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