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Here's What It's Like To Live With Muscular Dystrophy

"I just want to stand up and kick a soccer ball, but that will never happen now."

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BuzzFeed first talked to Shane Burcaw and his girlfriend Anna Reinalda back in February. Now, he has released a short documentary film, A Will To Survive, about his life with muscular dystrophy.

vimeo.com

The 22-year-old Pennsylvanian walks you through what it's like living with the disease and the challenges he faces everyday. Shane is not able to do everything normal people can do. However, Shane's determination to keep living positively is very uplifting!

According to the Mayo Clinic, "muscular dystrophy is a group of diseases that cause progressive weakness and loss of muscle mass. In muscular dystrophy, abnormal genes (mutations) interfere with the production of proteins needed to form healthy muscle...

...There are many different kinds of muscular dystrophy. Symptoms of the most common variety begin in childhood, primarily in boys. Other types don't surface until adulthood. Some people who have muscular dystrophy will eventually lose the ability to walk. Some may have trouble breathing or swallowing. There is no cure for muscular dystrophy. But medications and therapy can help manage symptoms and slow the course of the disease."

Shane tries to remain positive and spread awareness by documenting his life through his Tumblr page, Laughing at My Nightmare. And now in video form with his short film, BuzzFeed asked Shane how the project came together...

Via vimeo.com

"This video was inspired by a piece I wrote a few years ago shortly after a pretty bad hospital stay. The video recounts the terrifying process of being admitted to the hospital and thinking I was on my way towards death back when I was 17 years old. Obviously, I didn’t die! I attribute my survival through that illness to the positive mindset I had throughout, and also, ya know, like, doctors and medicine and stuff," Burcaw said.

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His hope is to shed light on his battle and help others with MD. To do that, he started his own non-profit, No More Nightmares. He hopes to raise $40,000 this year to be able to sponsor others with "vital equipment they need to live awesome lives."

Via indiegogo.com

His non-profit is already working! This is 15-year-old Shelby from Pennsylvania (pictured above). She has congenital muscular dystrophy, and applied for a grant for a specialized bed. Shelby recently lost her ability to adjust herself in bed, so Shane's non-profit found a bed that can help her. According to Shane, she has now regained her independence and comfort.

Anna and Shane have had a few stressful things happen recently, yet still remain upbeat and humorous about it all.

instagram.com

There were two very important updates he wanted to share. The fact that they went on vacation together and that they were recently involved in a car accident. Shane said, "Also, we recently got into a car accident together, which was just an all-around lovely experience. Although I’m not sure if the deer we demolished would say the same. Luckily, nobody was seriously injured. I asked Anna how I should answer this question and she replied: 'Tell them you couldn’t handle my dominance in the bedroom so we split ways.' So... that’s her update."

Though the crash may have set him back a bit, Shane has remained very busy setting up this new non-profit and will continue to do more fundraising.

"I have learned that living a comfortable, productive, awesome life with SMA requires many, many types of adaptive technologies. From ramps, to vans, to lifts, to computer equipment, I need a lot to live well. I’ve been lucky to always have the items I need, but many people with muscular dystrophy can’t say the same, so I’m working to change that. That’s exactly what No More Nightmares does. With the help of our collective community coming together to support this cause, we can change many lives, not just this year, but for years to come. That sentence had a lot of c- words," Burcaw said.

Learn more about how you can help with Shane's mission of No More Nightmares here.

Shane is also a contributor to his local newspaper, The Morning Call in Bethleham, Pennsylvania.

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