Camryn Akerson

Life changes when a baby comes into a family. Although work, social and sleep schedules are topsy-turvy until the routine settles in, a baby brings the joy of new love to a family. Most agree that a baby is life-changing, but those changes usually don’t happen until after the baby arrives.

The funny thing is, Camryn Akerson started changing lives before she was born. Her parents Scott and Valerie Akerson attest to that. They consider themselves much better people because of the values and perspective they began developing before Camryn’s birth. Abiding Savior Lutheran School students are learning valuable lessons about the unique differences God creates in us. Scott attests to that—he teaches there and witnesses those changes. Throughout 2012, St. Louisans learned what a miracle looks, acts and sounds like as Camryn joyfully embraced her role as Children’s Miracle Network (CMN) Ambassador for SSM Health Cardinal Glennon Children’s Hospital. CMN Executive Director Maria Langston wholeheartedly agrees with the saying, “If Camryn could go to the U.N., we could have the world taken care of in about five minutes! She’s an amazing spirit!”

That spirit and steadfast faith carried the Akerson family through Camryn’s first three years—12 surgeries, extended hospital stays and frightening times for the parents whose two older children experienced routine gestations and childhood years. The Akersons figured their third child would be life-changing, another of God’s enriching gifts. But, an ultrasound revealed that they were expecting nothing short of a miracle, considering the anticipated anomalies and medical issues their baby faced. From that day—months before she made her premature appearance on Feb. 9, 2006—Camryn Irene Leia Akerson began changing lives. And she hasn’t stopped.

“Every year on the ultrasound anniversary, we celebrate. It’s the day we became very different people,” Valerie says. Last anniversary, Valerie shared her gratitude in an online blog saying, “I am thankful that seven years ago we were told that the child I was carrying was ‘medically imperfect’… [but] she is perfect to us! This is one of my favorite days… to treasure and remember how different Scott and I became this day.”

After Camryn’s birth, doctors confirmed what they’d suspected, and Camryn spent a month in SSM Health Cardinal Glennon’s neonatal intensive care unit (NICU) as her care team diagnosed and treated the manifestations of VACTERL-H syndrome. Camryn experienced some, but not all of the syndrome’s characteristics, with vertebral anomalies, cardiac problems, a limb anomaly and hydrocephalus. Now, with her hydrocephalus treated and controlled and her cardiac defects surgically corrected, Camryn’s continuing problems affect her right arm, ribs and vertebrae (for which she wears a back brace) and include what Valerie calls “a serious head tilt,” possibly requiring surgery in the future.

Anyone meeting Camryn knows there’s no stopping this tiny powerhouse of personality—none of her challenges limit her fulfilling roles as 2012 Miracle Ambassador for CMN, little sister to Chloe and Collin or classmate to 20 first graders; taking a hip-hop dance class or participating in her school’s talent show—strutting her stuff (as best a tiny 6-year-old can) and belting out a Taylor Swift hit. Who could have predicted the miracles and life changes resulting from the day the Akersons learned that their baby might not survive, walk, talk or see?

Coincidentally — or not—it was on that November anniversary date in 2011 that the Akersons got the call prompting the exhilarating whirlwind of ambassador duties. Valerie says that the past year as a CMN Ambassador has been exactly what Camryn needed: “Not that she doesn’t have a good attitude, but she gets down on herself sometimes. She changes the way people look at life—always has a smile on her face…and is really compassionate.” When asked if Camryn was interested and whether the family could manage the schedule, Valerie says, “She was thrilled, of course…ready from day one!”

Serving as CMN ambassador gave Camryn a year of positive attention instead of the stares and questions she often encounters because of her physical challenges and honors her as Valerie feels it should—for who she is, her differences and how she has managed and overcome those differences. “This is positive recognition and has been an amazing experience this year,” Valerie says.

Although CMN, in its 25th year, labels each year’s ambassadors as “extraordinary,” Langston says all assume the fundraising and promotional role in unique ways. “It’s really what you make of it. Camryn has truly lived up to the title of ambassador. She and her family are true advocates for the hospital and wonderful ambassadors for CMN.”

With leeway to participate as much or as little as the ambassador’s interest and family schedule allow, Valerie says Camryn participated in nearly every appearance and fundraiser CMN scheduled. “She has danced at dance marathons, been in commercials, helped at our auction. Camryn has such a charm about her!” In addition to radio appearances promoting CMN and its events, Camryn appeared at Wal-Marts, Dairy Queen and even threw out the first pitch at a Cardinals game.

As Camryn’s ambassadorship came to a close, she shared a few of her favorites: favorite CMN appearance—Miracle Treat Day at Dairy Queen; favorite Cardinals player—John Jay; favorite SSM Health Cardinal Glennon staffer—Julie; favorite school subject—Math. (No kidding.) “She’s a gift to us. We’d never change anything…she’s truly a gift,” says Valerie.

And, a life-changing one at that.