Seven People Sticking It To SMA

Spinal Muscular Atrophy Awareness Month will permeate Seven Quick Takes this week, not with depressing statistics, but, in keeping with yesterday’s theme, by featuring seven individuals who are giving SMA the middle finger. Instead of laying around and being miserable (as society might expect), they are out kicking a$$ in their respective fields and giving parents like me a reason to never give up hope or underestimate their children’s abilities.

#1 Check out the artwork by Karen Wheeler. Most people without SMA can’t come close to the quality of her work.

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A post shared by Karen Wheeler (@karenwheelerart)

 

Each watercolor painting takes 100-500 hours of work. She was diagnosed in 1955, received a Master’s degree in 1981 and her work has been continuously shown in galleries ever since.

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A post shared by Karen Wheeler (@karenwheelerart)

 

#2 Jillian Mercado is a model and fashion writer. A SUCCESSFUL MODEL AND FASHION WRITER IN NYC WITH SMA. Your argument is invalid. All the runways this spring should be rocking the powerchair.

https://instagram.com/p/4o5G-svsdR/?taken-by=jilly_peppa

 

#3 Cashel Gardner is a great guy I met online who has made it his sole purpose in life to be the smiling ambassador for SMA.

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Life isn’t always easy for him or his sister Allie who also has SMA, but everyday, usually several times, Cashel is all up in my social media feeds just spreading awareness in his own unique way. When a parent receives the devastating news that their child has SMA, I feel doctors should just give out Cashel’s charity url to help soften the blow, as proof that children with SMA are not sentenced to a life devoid of all hope and joy.

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A post shared by Cashel Gardner (@cashelgisme)

 

#4 If you’re a blogger like me, you’ve probably have heard of a little site called Copyblogger.com. It’s former Associate Editor and frequent contributor Jon Morrow, who’s currently got 33.9K followers on Twitter, just happens to do all his work from a powerchair with the help of voice recognition software.

Oh, and now he’s also the CEO of Boost Blog Traffic. And, icing on the cake, he lives in a swank condo in West Palm Beach. I read his story and I feel confident in saying that I would be happy if Fulton and Teddy got into blogging full-time (and eventually let Tony and I move in with them in Florida.)

#5 I’ve mentioned Shane Burcaw before in these parts. He’s like Tony Robbins in a powerchair with a slightly fouler mouth. Not only does he have a successful Tumblr that shares the reality of SMA with a heavy dose of snark, he’s got a book, a newspaper column, a charity, a 5K (that has too many damn hills in my opinion) and a talk he takes on the road.

 

#6 MJ Queen-Purk was given the same prognosis as everyone else on this list, but with the help of her dedicated caregiver Brenda Hanson, she started the charity Blankets for Kids with SMA (B4SMA), which sends cozy fleece blankets to kids with SMA. Both Fulton and Teddy have their own.

MJ and Brenda were some of the first people that reached out to me from the SMA community after Fulton’s diagnosis, and when I was finally ready to connect with other families, they were a huge help. MJ also created  B4SMA productions which creates videos of children and families in the SMA community and she runs a Facebook prayer page. I doubt there’s anyone in the SMA community today that doesn’t know B4SMA. If you’re newly diagnosed and trying to find answers, support or friends, MJ and Brenda will ultimately find you and do their best to help you….kind of like the A-Team, with less explosives.

#7 And this list wouldn’t be complete if I didn’t mention Steve Mikita,  an assistant attorney general for the State of Utah for the last 28 years. The man knows disability law. I almost pity the guy to who tries to steal a handicap parking spot from Steve… almost.

 

And this is just the tip of the iceberg. I’ve mentioned some really exceptional people, but there are many more men, women and children out there living everyday with SMA who don’t deserve a pat on the hand, a condescending glance or dismissive comment;  just the freedom to be contributing members of society like everyone else, even if their greatest accomplishments are only the love and smiles they share with family in the comfort of their homes. We need to not label and limit anyone’s potential, regardless of statistics, or undervalue even the smallest contribution to the world at large.

So thank you Karen, Jillian, Cashel, Jon, Shane, MJ and Steve for not listening to the naysayers. Thank you for living your life, and doing what you wanted regardless of what society or the medical professionals might have told you. Thank you for not letting SMA stifle your dreams, your creativity or your voice.

Now it’s time to link up your takes. Be sure to link back to this post so your readers can find the rest of the Quick Takes. I look forward to reading your posts!