Saving Savannah one tweet at a time

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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  • MaureenMonte

    Amber, Love your stories, your hope, your energy, your ability to allow your pain to connect you to the rest of the world, and find beauty in it. I’m a follower now and a retweeter! Go Savannah! Mark, thank YOU for allowing Amber to participate in your blog and remind us of what social really means. Love you guys!

  • jennifer lehner

    Amber thanks for sharing this incredibly inspiring and powerful story with us. I just followed you on Twitter and Facebook, and look forward to learning more anout what I can do to help. Mark, great of you to share your reach to help the world learn about Mitochondrial disease. #makingadifference #goodness

  • catherinetatum

    What a wonderful post. Thanks for sharing! Twitter is such an important tool and your post has made me aware mito and your community. I’ll be praying for your family and your strength.

  • LizReusswig

    This is a beautiful story and I’m so glad we live in an era that these kinds of connections can happen! I don’t think I’ll be able to ever send another tweet without thinking of your family and especially Savannah! 🙂

  • Great article, it’s lovely to hear a story of the positive influence that social media can have in these situations.

    Thanks for sharing 🙂

  • Jamie Wallace

    This story broke my heart and then gave it wings. There is beauty and kindness all around us, if only we know how to see it … even in the darkest, most tragic circumstances. My heart goes out to you and your whole family and I thank you for reminding us about our potential to make a real difference for someone just by listening, connecting, and being kind.
    Savannah is beautiful and you are amazing for sharing her story and your story. Thank you.

  • What a great story and Savannah is a Q-T-Pie. It’s amazing how far one tweet can take you and you never know until you just do it. The best of luck to you and your family as you wage this battle!

  • Amber Greenawalt

    Thank you Maureen for your comment and your support of Saving Savannah! I’m so glad that you enjoyed the post. I can honestly say that this is not a path I would have ever chosen for us but I’m grateful in so many ways that we’ve been on it. We are forever changed by our experiences and for me, my eyes were opened so seeing beauty like never before.

  • Amber Greenawalt

    Kristen, thank you for your kind words. We think Savannah is pretty cute too but it’s always wonderful to see it from someone else. Thank you for supporting Saving Savannah!

  • Amber Greenawalt

    Jamie, you said is sister, Beauty and kindness all around, if only we know how to see it. We have seen it and we have felt it. From people like you. I am so glad that her story…our story, touched you. Thank you for your commenting and for your support of Saving Savannah.

  • Amber Greenawalt

    I am so glad too Liz! The power to connect people is astonishing when you really stop to think about it. Thank you very much for reading and taking the time to comment.

  • Amber Greenawalt

    So glad to have your support Jennifer! Thank you for choosing to be part of the cure and for helping us to save Savannah! My gratitude to Mark for sharing his reach is bigger than my words. This is an amazing community and we are very blessed to have become a part of it. Best book purchase EVER. 🙂

  • Amber Greenawalt

    Catherine, it just made my day that this post made you aware of Mitochondrial Disease and the people it affects. That is our whole purpose in trying to raise awareness. Awareness is the very first step to finding a cure. I thank you for being a part of that and for your prayers. God bless!

  • Amber Greenawalt

    AMEN Barry. With so much negativity out there it gave me great joy to share a story of the positive influence of social media. There is incredible healing and growth in connection.

  • Wow. That’s pretty powerful. Thanks Mark for spotting that story and running the post. Amber stay strong, Mamma. Savannah, do you best. There’s a couple hundred more hearts (and counting) that skipped a beat with you in mind as they read this post.

  • Amber Greenawalt

    Thank you for your kind words Frank.

  • Billy Delaney

    Through the years I’ve watched people like you face the unseen monsters arrive and leave without regard taking as they will. My but what a fight so mamy put up. My own sweet heart faced down the silent killer cancer and still lives, laughts and loves. Often we listen to Leonard Cohen and find the honey in his words sooth the beaten soul and heart. I hope for only the best for you, your children and the future.

  • Amber Greenawalt

    Wow Billy. What a beautifully put comment. Thank you for sharing. My heart goes out to you and yours too.

  • nylonliving

    Wow! your daughter is adorable and such spirit. My youngest son had mitochondrial disease and died at 5 weeks. He had to have unrelated surgery and at the time we didn’t know about the disease. He never woke up from anesthesia and no one knew why. It took another 18 months for the doctors to figure out he had had mitochondrial deficiency syndrome and the surgery may have (probably) accelerated his life span. I completely applaud your efforts to raise awareness of this disease and pray for a cure to be found for your lovely child.

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