Defying the Odds

When Julie Rose comes to Children’s Hospital Los Angeles for appointments, it often turns into a social event. The 8-year-old, a lifelong patient, is known to many hospital team members and loves catching up with people she considers to be old friends. And the feeling is mutual.

“When people see her in the hallways, they will stop and chat. I have wondered what makes her so memorable,” Julie Rose’s mom, Christina, muses. “It’s just who she is—talkative, approachable, friendly.”

Julie Rose is also a huge fan of the hospital that has cared for her since she was a baby. Born prematurely and diagnosed with Pierre Robin sequence, a rare condition that affects the head and face, Julie Rose had cleft lip and palate, and micrognathia (an undersized jaw). For the first three months of her life, Julie Rose was a patient in CHLA’s Steven & Alexandra Cohen Foundation Newborn and Infant Critical Care Unit (NICCU).

“When we were in the NICCU they told us she might not crawl, she might not walk,” Christina says. “As she’s gotten older, she does have some physical limitations, but she does everything in her own time and her own way to make it work.”

Now in second grade, Julie Rose is a Girl Scout and enjoys being outdoors, doing art, and playing with her extensive doll collection. Stemming from her own experience at CHLA, she often role plays with her dolls, performing procedures on them and providing the right treatments to heal them.

“She knows quite a bit about her experience and asks about what happened to her,” Christina says, noting that Julie Rose has undergone 16 surgeries and continues to see CHLA specialists in Dentistry and Orthodontics, and in the Jackie and Gene Autry Orthopedic Center for scoliosis and hip dysplasia. “I kept an online photo album for her, and she’ll say “Wow, I went through all of that?”

“She loves, loves, loves CHLA and she has been a Junior Ambassador since she was 2,” Christina says, referring to the program for kids and teenagers who support the hospital’s mission by fundraising and participating in a variety of volunteer and leadership opportunities. “She likes meeting the other kids and hearing about the things they do to help raise awareness and fundraise.”

In June, Julie Rose will join thousands of hospital supporters at CHLA’s annual Walk & Play L.A. event, where she will serve as one of three patient “Champions.” The role is perfect for Julie Rose, who has overcome incredible odds.

Accepting of others and exuding empathy, “Teachers, nurses, staff at the hospital—anywhere we go, they’re like, “Julie Rose is such a joy!” Christina says. “When I think of all the things she’s gone through, you’d never guess in a million years if you just met her. She’s awesome and happy.”