amber and savannah

By Amber Greenawalt, {grow} Community Member

I have three children, Sebastian 8, Siennah 7, and Savannah 5. My oldest child was diagnosed with Osteoclastoma (a bone tumor) in March, 2008. At the time I was pregnant with my youngest daughter, Savannah. She was healthy for the first ten weeks of her life and then she became known as “failure to thrive.” She took us on a wild ride that eventually led to the diagnosis of Mitochondrial Disease, an incurable and progressive cellular energy disorder.

One evening around this difficult and stressful time, my husband was watching an episode of the TV show Battlestar Gallactica. I had not seen the show before but I caught an opening scene where the character Laura Roslin, played by actress Mary McDonnell, is diagnosed with cancer. She slips into a bathroom, tears open her blazer and shirt to feel her own heartbeat.

The scene ripped me to shreds because I remember having a moment exactly like that in the bathroom of my son’s preschool in the days just after he was diagnosed with cancer. At that point I formed a bond and became a life-long fan of Battlestar Gallactica and of the actress Mary McDonnell.

Over time, I crossed that great chasm into true fandom and signed up to attend a convention for Battlestar Galactica in Houston. The organizers of “Galacticon” were holding a Twitter Party to generate excitement for the event. I wanted to participate but had no idea how to navigate Twitter. So I headed to the book store, where I found the The Tao of Twitter.

What struck me about the book was that it took the time not to just explain the mechanics of Twitter but how it could be a springboard for relationships and networking. I learned to navigate Twitter enough that I was able to participate in the Galacticon Twitter Party. The very first person who tweeted me was the actor Richard Hatch and my first follow back was Edward James Olmos, also a star of the show. So right off the bat I was thinking this Twitter business was pretty cool!

Eventually several Hollywood stars and writers became supporters of an organization I established to increase public awareness about Mitochondrial Disease — “Saving Savannah.” And it all came about because of one random tweet.

I recalled a favorite story from The Tao of Twitter when a whole cascade of events and relationships started due to Mark’s simple, yet catalytic tweet, “Go Steelers!” This happens!

mini maryMost children with “mito” don’t live to see their teenage years because there is no cure. They dream of a cure, but they also dream about what they want to be when they grow up. This year to celebrate Mitochondrial Awareness Week, Savannah dressed up as several strong female characters, and of course this included characters played by Mary McDonnell. I posted the photos to my blog where I have been chronicling our adventures since 2006. The post was titled, “Mini-Mary, Mito Awareness and More.”

I specifically tweeted it to the cast and crew of the shows that Savannah was representing with her dress-up fun. The result was incredible! My post was shared and retweeted thousands of times, all helping to drive new awareness of this disease. For many people, it was the first time they had heard of the disease.

Our son Sebastian finished his cancer treatment last June. I myself beat cancer (a much milder form) this summer. We are thrilled to be able to say we are SURVIVORS but “survivor” is not even a term in the world of Mitochondrial Disease. So, we fight on.

But back to our Twitter Story …

The Mini-Mary post had been tweeted by Mary McDonnell’s hairstylist, costume designer, make-up artists, and co-stars and finally, Mary herself saw the post … and she followed me on Twitter! This is significant because she only follows 10 other people. The next day her PR firm contacted me via email asking for my address because, “Mary would love to send something.”

If there is one thing I have learned in the years that we have been fighting disease, it’s that there is SO MUCH beauty in this life. We have experienced devastation, but we’ve also witnessed so many amazing moments and this was one of them. When I stand back to look at how the social web weaves us together like a tapestry it just blows my mind.

I know {grow} usually teaches you about using social media for business purposes, but I wanted to share with you this story of the incredible things that have happened once I discovered my own “Tao of Twitter.”

amber greenawaltAmber Greenawalt would love for you to learn more about Mitochondrial Disease, following the Saving Savannah Facebook Page and also follow her efforts on Twitter.

 

 

 
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