Long QT turns athlete into beauty queen

During my senior year of high school, the world as I knew it came crashing down. I’ll never forget that April evening in the year 2000—two years after collapsing at a track finish line—when I was officially diagnosed with Long QT syndrome, an inherited heart condition characterized by an abnormal heartbeat. My mom turned to me with tears streaming down her face, still on the phone with my electrophysiologist, who had just received the results. I was advised to avoid competitive sports.

No more playing basketball until the streetlights came on. No more racing my friends on the track. No more hopes to play Division I soccer. No more dreams coming true—the dreams of the little girl who wanted nothing more than to compete for the rest of her life.

Not only was my true passion taken away from me, but I was told I was a ticking time bomb that could go off at any moment. I was confused, angry, sad. Despite the amazing support of my friends and family, I felt more alone than I have ever felt in my life.

But—I was alive. I had been given a chance. After digging deep to find the strength and resilience that youth are inclined to possess, I decided to concentrate on what I had, not on what I didn’t have.

 

soccer (2)So, I did what anyone would have done. I entered a beauty pageant.

Yes, that is supposed to be funny, especially if you knew me then. I was the least likely beauty contestant ever! Ever since I could walk, I preferred rolling around in the dirt and play-fighting with boys to wearing a dress or brushing my hair.

But I saw pageants as a new form of competition, a way to fill the void left by sports.

And I certainly love a good challenge.

That first pageant helped me build confidence in completely new ways—and believe it or not, it was fun. The best part was the chance to speak publicly about my heart condition. It was a truly empowering and therapeutic experience, and I could not believe how much impact I made just by sharing my story. At that time in my life, I was also throwing myself more deeply into my academics, my love for creating art and community service. It made me feel great to know I could still accomplish so much and mean something to others, even when I wasn’t able to participate in the one thing I had thought defined me.

One month before entering college, I had my first implantable cardioverter defibrillator (ICD) implanted at Boston Children’s Hospital. (I’m currently eight years into my second.) I made it my mission at the time to educate the public about heart conditions that were claiming young lives. I stressed the notion that heart disease does not discriminate. And people listened.

In 2006, I claimed the title of Miss Massachusetts. Doctors had warned me that my heart could race from playing sports, but they apparently never checked the heart rate of a girl who just won a pageant! A million thoughts rushed through my mind as the crown was placed on my head; here I was, the same girl who once didn’t know how to walk in high-heeled shoes or put on mascara. Most importantly, though, I realized my new role would give me a megaphone for heart disease awareness. I could contribute to a cause that was saving lives.

In January of 2007, I proudly represented my state in the Miss America Pageant. National media featured my story and my mission. Backstage, one contestant asked me if I wanted to borrow her make-up to cover my scar for the swimsuit competition. “No thanks,” I told her. “It’s a badge of honor.”

I became a national spokesperson for the American Heart Association and have been able to speak on Capitol Hill several times. I have spoken for the Sudden Arrhythmia Death Syndromes foundation (SADS), as well as Parent Heart Watch. Through it all, I have met countless inspiring individuals and organizations that are part of the fight to save lives.

The best part of my role as spokeswoman for Long QT syndrome has always been meeting children and teenagers who are affected by heart disease. I encourage them to view their syndrome with a new sense of hope. It’s not every day you get to compare scars with an eight-year-old who has had open heart surgery. Or better yet, have a five-year-old who has his own ICD grab your hand and yell, “Wow, that’s so cool! Miss Massachusetts has a heart problem too!”

baby

It’s been a long journey, and it’s certainly not over. Eight years after a whirlwind of pageant adventures and 15 years after my diagnosis, I am a school counselor and art therapist working with high risk youth. Most importantly, I am a proud wife to Josh and mother of four amazing children: Lorelei, Evan, Andreas and Gwenyth. Pregnancy and motherhood certainly brought a new series of challenges for me. Concerns about passing on my genetic condition have definitely caused some stress. I am adamant that my kids are monitored and cared for medically as needs arise, and I consistently remind myself that they live in an age of great medicine and technology that can diagnose and treat abnormalities like mine. This faith has helped me accept that I can only take on the challenges presented to me and take sensible precautions, not fixate on the “what ifs” that can all too often consume us.

I like my scar. I like the box in my chest. I’m proud to say I “rock” a heart condition. Being a survivor hasn’t been as much about the physical aspects but the emotional challenges this ordeal has taken.

My story is meant to encourage you to appreciate your positive qualities, successes and challenges while continuing forward in life no matter the obstacles. I can think of no better cause to fight for than life, and my work is in memory of those who could not be saved.