Nov. 12, 2013 at 4:39 PM ET
Savannah Greenawalt was just 10 weeks old when her healthy childhood ended.
Her parents, noticing that she had stopped putting on weight and was suffering from other issues such as gastrointestinal problems, brought her to the hospital. Soon, they were on road that led to numerous tests for Savannah, who was diagnosed with mitochondrial disease three weeks after her first birthday.
This currently incurable cellular energy disorder keeps Savannah’s body from being able to convert food and oxygen into energy. Her mom, Amber Greenawalt, says children with Savannah's condition rarely reach their teens, but that hasn’t stopped the now-5-year-old girl from dreaming of her future, often through dress-up.
One day this summer, amid their princess and fairy costumes, Savannah and her older sister, Siennah, 7, lamented the lack of female heroes they could dress up as. Greenawalt was inspired to look for female role models on TV, hoping the characters would help her daughters see that they can grow up to be anything, from the president to a heart surgeon.
“I felt like this was especially important for Savannah," Greenawalt told TODAY.com. "Children with mitochondrial disease dream of a cure, but they also dream about what they want to be when they grow up. We decided that it would be fun and meaningful to do a photo shoot of Savannah in her new thrift store dress-up finds."
So she staged a photo shoot where Savannah dressed up as strong female characters from pop culture, including President Laura Roslin and Viper pilot Kara “Starbuck” Thrace from "Battlestar Galactica," Deputy Chief Brenda Leigh Johnson from "The Closer," police Captain Sharon Raydor from "Major Crimes," and Dr. Virginia Dixon from "Grey’s Anatomy."
Though she's too young to watch the shows in which they appear, Savannah said that she finds the characters inspirational “because they are courageous and brave. I loved getting to pretend to be the different characters and taking pictures.”
Her mother is no stranger to family illness. Her son Sebastian, now 8, was diagnosed with osteoclastoma, or bone tumors, when she was pregnant with Savannah, and Greenawalt herself has suffered from recurring skin cancer.
Today, both Amber and Sebastian Greenawalt are cancer-free, but Savannah's struggle is a fight for the whole family. “Both Sebastian and I get to say we are ‘survivors’ but that is not even a term in the world of mitochondrial disease," Greenawalt said. "That is why we continue to fight so fiercely."
Greenawalt shared the photo shoot on her blog during Global Mitochondrial Disease Awareness Week, and has a Facebook page where fans can leave messages of support. Savannah was even “Fangirl of the Day” last week of online geek-girl fashion retailer Her Universe.
“It’s really important for Savannah to imagine herself grown-up. To know that she can be anything…to never let herself be defined or limited by the disease that could claim her life at any time,” Greenawalt said. “For her, there is something really magical about stepping into someone else’s shoes. Almost like she can let go of the weight of her disease and be free to do or be whatever she wants.”
She hopes the attention from Savannah’s photos will introduce people to mitochondrial disease — and feel her urgency.
“It wasn’t until I sat down to go through all of the photos on my phone that I got very emotional wondering if we’ll ever get to see Savannah command a room in a dress suit and heels or scrubs in an operating room or pilot a plane as an adult,” she said. “The photos resonated with me deeply about the dire need to find a cure for this disease, or at the very least viable treatments so that kids like Savannah get to grow up.”