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Witnessing Remarkable Strength

I am routinely struck by the courage of our Donate Life Ambassadors. Every day, I get to work with families who tragically lost a loved one but chose to give life, people who faced death but survived thanks to a donated organ and others who fight sickness while waiting for a transplant to come. They move forward with smiles on their faces and love in their hearts, sharing their stories and hoping to inspire others to register as organ and tissue donors.

Their strength leaves me in awe. The ambassador I met most recently was no exception. She was awesome.

I ventured out to eastern Ohio last week with a reporter and photographer from The Columbus Dispatch to interview Connie Culp, the nation’s first face transplant recipient. I had spoken briefly with her on the phone and followed her story over the past few years. Connie was one of 24 individuals taking a seat for donation during our 24-hour event and we were all excited to hear her story.

Connie Culp shares her story at Lifeline of Ohio's 24-hour event April 2, 2011

As soon as we arrived, Connie welcomed us with open arms. Sweet and smiling, Connie offered coffee while her dog, Baby Girl, greeted each of us enthusiastically. We settled into her cozy living room with her daughter, Alicia, and over the next two hours I found myself whispering “wow” over and over again.

Connie underwent nearly 30 painful surgeries after she was shot in the face in 2004. None of them were able to correct the incredible damage done by the shotgun blast and Connie told us that doctors lost her on multiple occasions during the procedures. Her face was caved in; she struggled to eat, lost her sense of smell, needed a tracheotomy to breathe and had headaches every single day.

Doctors tried everything to heal Connie, and she began to think there wasn’t a cure. That’s when they decided to consider a face transplant, the first of its kind in the U.S. Connie implicitly trusted her doctors and nurses, who she describes as family, and underwent a successful transplant in December 2008 thanks to the generosity of a donor’s family.

Now, more than two years later, Connie is thankful for her gift. She is grateful for the smell of coffee, the taste of steak, the way sun feels on her skin and pain-free days. She told us that she doesn’t have the ability to frown anymore, and she doesn’t want to.

For someone who has been through so much, Connie has a great sense of humor and is quick to laugh. She had the whole crowd laughing at our 24-hour event when she quipped that she can now clean the house if she wants – but she lives alone and she’s legally blind, so she can’t see it. She added that there are some advantages to being blind!

Connie had the chance to meet her donor’s family recently. This transplant was beyond the realm of normal organ and tissue donation. It required special permission from the family, a family who thought so selflessly of a stranger who desperately needed this gift. Connie presented them with a framed poem to honor the woman who changed her life. Like many transplant recipients, Connie said she struggled to find the words to thank them.

“You can’t say enough,” she said. “They gave me my smile back.”

On the drive back to Columbus, we all reflected on Connie’s incredible story was and that only a person with her resilience and positive attitude could have dealt with it as she had. I also marveled at the selflessness of a donor family who gave a gift that had never been given in the U.S. They understood the difference their donation would make and said “yes,” changing Connie’s life and future of transplantation forever. I returned to the office and had trouble finding the words to share how incredible this story was.

Meeting Connie was the perfect way to prepare for Donate Life Month and our 24-hour event. Her story, like all the stories we share, shows the incredible impact of organ and tissue donation and the remarkable strength of the individuals who give and receive life.

– Rachel Lewis, media relations/community outreach coordinator

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