Inspirational Young People With Muscular Dystrophy: Sam and Zoe


In this video from Muscular Dystrophy UK, two teenagers share what it’s like living with the disease and some of the frustrations they experience on a day-to-day basis.

MORE: How service dogs can benefit people with neuromuscular disorders.

Fourteen-year-old Sam from Cheltenham and 13-year-old Zoe from Bristol explain that one of their main bugbears is that people often only see the wheelchair and not the person in it. The two talk about how they feel left out of social events when friends assume they won’t be able to attend because the venue isn’t accessible, often not even asking them beforehand if they want to go or if they can think of any practical solutions.

Sam explains that he’s had to miss out on two overseas trips with school because his teacher felt he wouldn’t be able to participate or would create too much work, rather than come up with a plan to include him. He now feels as though he’s a nuisance and unwanted.

MORE: How to talk to your child about their neuromuscular disease.

Muscular Dystrophy News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website.

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  1. “With 1000’s of Sam’s & Zoe’s out there.. frustrated, fed up and saddened by people’s ignorance & lack of understanding, how much longer must they wait before society gets inclusion? If you really ‘listen’ to what Sam & Zoe are saying, really ‘listen’ to the spaces in between their sentences, really ‘listen’ to the words they use … you’ll I hope feel compelled (as I was) to leave a comment that perhaps helps those who don’t get it.. to get it” (SOURCE: Michael McGrath, Founder & CEO, The Muscle Help Foundation)

    • Jessika says:

      They suspect my son of having LGMD2Q and Sams story about being left behind on field trips hit home. As my sons school just went on a trip which involved a 4hr mountain hike with picnic. That was one day of the 5 day trip but because he couldn’t do that one thing he wasn’t eligible to go. I cried watching this video as I can see my son in these two lovely kids especially Sam with his nervous hand twisting. My son doesn’t need his chair all the time, and this confuses people and he gets upset when people stare. I hate that there are so many people with this disorder. I pray for a cure one day

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