4 People Who Have Something to Say About SMA and MD

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by Wendy Henderson |

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The following videos show how people living with muscular dystrophy (MD) and spinal muscular atrophy (SMA) can smash the stereotypes associated with having a disability, and lead rich and full lives.

First up is 35-year-old Michael Klinkhamer, who has Becker muscular dystrophy. In this video shared by Story Hive, Michael explains that he spends all of his time advocating for people with the disease. Michael also helps young people living with the condition realize that they can be more independent than they think with the right guidance.

Michael also explains that people with MD enjoy all the same things as those who don’t have the disease. While they may have to do things slightly differently or do them much more slowly, they can still have the same life experiences.

MORE: Talking to family members about your child’s neuromuscular disorder

In this video from Madeline Mary Evans, Madeline explains how the ukelele is helping her manage the day-to-day aspects of living with SMA. Twelve-year-old Madeline from Utah has been playing the ukelele for 2½ years, and has found that the instrument, along with singing, has given her something positive to focus on. After discovering her muscles were too weak to play other instruments like the piano or violin, the ukelele offered a perfect compromise in terms of size and weight.

Now she takes great pride in delighting audiences with her singing and playing.

MORE: SMA Awareness Month – Ideas for raising awareness

In this video from Attitude, 21-year-old Blake explains that doctors didn’t expect him to live past the age of 6 after being diagnosed with SMA type 2.

However, Blake has managed to defy doctors’ expectations and is currently studying at university. In the film, he talks about life with SMA, and discusses some of the negative aspects of living with a disability that make you dependent on other people.

MORE: Vaccination recommendations for people living with neuromuscular diseases

This video is all about Ethan Britt, a young man living with mild Becker muscular dystrophy. Ethan was diagnosed fairly late in childhood following a fall while playing baseball. Although Ethan is still very strong and doesn’t experience any mobility issues, he’s very vocal about raising awareness of muscular dystrophy and how the disease affects those who have more severe forms.


MORE: Daily impact of SMA types 2 and 3

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