Alicia’s brave face

Despite a difficult diagnosis that’s left her face visibly scarred, Alicia leads a life of hope and courage. She is an inspiration to all who know her.

Amy Torres’ heart aches when she thinks of the adversity her 11-year-old daughter, Alicia, endures every day just leaving the house.

“Life can be tough on the ‘outside,’” says Amy, referring to the world beyond the confines of UNC Hospitals—a world full of people who don’t know how to react when they see Alicia, the left side of her face misshapen by an abnormal blood vessel development known as an arteriovenous malformation (AVM).

“Just going to school can be a struggle,” adds Amy. “Alicia is a really strong girl, but she’s been bullied at times, and I know it really hurts. I can see it.”

Prom Night
Alicia dances the night away with members of the UNC Dance Marathon at the 2013 Inpatient Prom, an event hosted and organized by pediatric residents at UNC. (click to enlarge)
But Alicia has home away from home where she’s not so self-conscious, a place where she knows she is loved for who she is, where people don’t stare or pass judgment. That second home is North Carolina Children’s Hospital.
 

Walking through the Children’s lobby at the annual N.C. Children’s Promise Radiothon, Alicia sports an ever-present smile, obviously enjoying her role as a patient ambassador. Today she shares her story: she’s been a UNC patient since 2009 and has undergone more than 700 hours of surgery in that time.

“I’m here to thank all my doctors, because if they had not done the surgery, I wouldn’t be here today,” says Alicia.

The patient ambassador program gives patients and their families a public way to champion UNC Children’s. Ambassadors are chosen from a group nominated by faculty and staff for exemplifying the courage and determination of the thousands of sick and injured children treated by UNC Children’s every year. Ambassadors represent the hospital at events throughout the year, sharing their stories of hope while raising awareness of the state’s premier hospital for children.

Alicia’s AVM, like most AVMs, was present at birth but not diagnosed years later.

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Alicia and her mother, Amy, share their story with DJs from La Ley at the N.C. Children's Promise Radiothon on Nov. 20, 2014. (click to enlarge)
“She was born with it, but we didn’t know until she was 5 years old,” explains Amy. 
 

In retrospect, Amy can see the signs. The left side of Alicia’s face was always warm to the touch and would slightly swell when Alicia was upset or playing hard.

At age 2, the bleeding started. First it was Alicia’s gums. Later, it was nosebleeds. Over the next few years, the “it’s probably nothing to worry about” pediatrician visits led to appointments with a pediatric hematologist in Durham, N.C., but no answers. Then a massive nosebleed in 2009 led the family to Carlton Zdanski, MD, chief of pediatric otolaryngology/head and neck surgery at UNC Children’s—a man Amy calls “an angel sent from heaven directly to us.”

“Some people like to call him ‘Dr. Z,’” declares Alicia, “but I correct them. He’s Dr. Zdanski.”

“I remember that he introduced himself to Alicia first and then to me and my mom, and that really struck me as something special,” recalls Amy. “He felt her cheek, gave it a listen, and knew almost immediately it was an AVM.”

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Alicia and her mother, Amy, share a happy moment on Valentine's Day 2012. (click to enlarge)
Subsequent tests confirmed the diagnosis, and the week following her sixth birthday in September 2009, Alicia had her first surgeries, a series that spanned four consecutive days.
 

And there have been many more surgeries since, along with hospitalizations for bleeding episodes. Along the way, Alicia also has formed special bonds with many other caregivers, among them her nurses on 7 Children’s.

“Oh, there are so many good nurses up there,” says Alicia.

When pressed to name names, she talks about several, including Phyllis Madrey, RN. The admiration is mutual.

“Alicia is so resilient,” says Phyllis. “She’s so full of aspirations and dreams. After all she has been through, she gives us an opportunity to look at things with fresh hope.”

When not at the hospital, Alicia keeps busy with school. She is a fifth grader in her hometown of Sanford, N.C., where her favorite subject is science, particularly the experiments. She also enjoys representing UNC Children’s in her role as patient ambassador, recently attending the Country for Kids, a concert organized by 94.7 QDR to benefit UNC Children’s, and enjoying the VIP experience at an event with the Carolina Hurricanes hockey team.

“When Alicia gets stares, she’s better about it than me,” says Amy. “She’ll be like, ‘Momma, leave it alone. It’s okay. They don’t know.’”

“I’m so grateful to have people who understand, who don’t see her any different,” adds Amy, “because that strength comes from having so many people who love her.”

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