A Conversation with Miss Walking Tall Sarah Stonier, Part I

We were thrilled when we first learned about Sarah Stonier and her decision to embrace EB as a personal platform for the Miss Tennessee pageant. As a pediatric healthcare recruiter for a healthcare services organization in Knoxville, Sarah crosses paths daily with children with special needs and their families. As previous winner of Tennessee’s Miss Walking Tall 2011 competition, Sarah found an immediate platform to share what she felt was an important message when she qualified to participate in the state contest, which serves as a preliminary step toward the Miss America scholarship pageant.

Though her formal pageant journey ended at the Miss Tennessee event, Sarah continues to be an outspoken and proactive advocate and fundraiser for EB patients and their families, to raise awareness and research funding for the Epidermolysis Bullosa Medical Research Foundation (EBMRF), through her Facebook page and personal blog. In part 1 of our two-part conversation, we learn about her recent pageant experiences and what led her to take on the mission of raising EB awareness.

EB Resource (EBR): You recently participated in the 2011 Miss Tennessee pageant as a preliminary to the Miss America competition. What did you take away from the whole experience?

Sarah Stonier (Sarah): I was abundantly blessed through this experience. Not only did I walk away with accolades, multiple scholarships and completed goals, I took away a newfound desire for a disciplined lifestyle of nutrition and fitness, a wonderful new community of friends, and a deeper appreciation for the number of people who supported me along the way.

EBR: Prior to that, you took part and won the Miss Walking Tall Scholarship Pageant, and I understand it was your final year of eligibility. What led you to decide to pursue this particular title?

Sarah: Every year I would make my list of "open" pageants, or pageants that are available to girls outside the county of the title that fit within my work schedule. I usually wouldn’t participate in West TN pageants because I truly wanted to be close to the area of my title so I could promote it to the utmost. However, it being my final year of eligibility, I took the western pageants into consideration. I was supposed to compete in a triple-crown pageant the night before but I came down with the flu and had to withdraw. There were only two pageants left. I felt a tiny bit better on Saturday night, and all I could think of was the next Saturday at the very last pageant being called as the first runner-up and in that moment, my dream would be over. So I gathered all the gumption I had and drove to West TN that Sunday to compete in Miss Walking Tall and I won! I absolutely LOVE the history behind my title and how the title and story tie to my own personal testimony.

EBR: Professionally, you oversee a large nursing staff that works closely with special needs children. Can you share with us more about what you do and why you do what you do for a living?

Sarah: What I do for a living is very, very special. I get to be an advocate for children who have a variety of diagnosis, anything from cerebral palsy to shaken baby syndrome. I coordinate nurses to provide home healthcare and enhance the quality of life for these amazing children. It is worlds away from what I thought I would be when I grew up, but I have captured the vision of my company, and I take pride in working to serve others.

EBR: Was it through your work that you first became familiar with epidermolysis bullosa? What is its personal connection to you?

Sarah: It actually was not through my job. One of my very best friends in Knoxville had a niece who was born with EB. I would get prayer emails about little Hailey and decided to research her condition. The information I gleaned is what really informed me about EB, and my interactions with Hailey are what solidified my choice to make EB my personal platform.

EBR: Why did you decide to focus on EB awareness as your pageant platform for both Miss Walking Tall as well as Miss Tennessee?

Sarah: One of the articles I was reading mentioned how painful it was for someone with EB to be hugged. That broke my heart. I love to hug and be hugged. I know how powerful that physical connection is for me to express my love to someone, so reading that information inspired me to embrace the cause of EB.

EBR: What kinds of feedback have you received from the EB community?

Sarah: I have been overwhelmed with gratitude for the feedback I’ve received from the EB community. I didn’t think they would ever know who I was. I definitely made EB my platform, thinking Hailey’s family would of course be the only family who knew about me and why I did it. My Miss Walking Tall page is full of encouragement and thanks from EB families and I was deeply touched by that!

Next week, we’ll continue our conversation as Sarah shares her thoughts about what’s necessary to gain greater attention for EB and steps she is taking on her own personal mission to start a conversation and raise fundraising dollars for research to treat and cure epidermolysis bullosa.

Sources:

Sarah Stonier, Miss Walking Tall 2011, Facebook

A Surrendered Crown, a blog by Sarah Stonier

Related Posts:

A Talk with EB Support Group Leader, Connie Flowers, Part I

A Q&A with EB Friends Creator, Chris Pez Matthai, Part I

A Q&A with DebRA’s Nurse Educator


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