Exceptional Care and Support Helped Armando Grow Into a Thriving, Confident Teen
May 11, 2021
Born with Treacher Collins syndrome, Armando has been coming to Children’s Hospital Colorado for countless procedures, surgeries and medical care since he was a baby. Read about the hospital support programs that have made a tremendous difference in Armando’s life.
Last month, Armando, a Children’s Hospital Colorado Patient Ambassador, celebrated his 17th birthday. A highlight of the history buff’s special day was attending a virtual bingo night, where he was serenaded by a group of well-wishers. Although he’s never met any of them in person, they share a common bond: all are cleft lip and palate or craniofacial patients at Children’s Colorado.
“I really enjoy interacting with others and not having to feel embarrassed and alone,” says Armando, a high school junior who has Treacher Collins syndrome.
The relatively rare genetic condition affects the development of facial bones and tissues, particularly ears, eyelids, cheek and jaw bones. Some kids, like Armando, are also born with a cleft palate, an opening in the roof of the mouth.
Recognizing the need for support and connection for kids like Armando, Jamie Idelberg, an outreach coordinator at the hospital’s cleft lip and palate and complex craniofacial clinics, began planning events for patients seen in the clinic, including creating a special “Cleft Camp” in 2009. The popular overnight camp, historically held each summer and winter in Breckenridge, transitioned to a virtual format after the pandemic hit with various online events now held regularly.
“We wanted to create a community for these kids, so they can realize they are not the only one going through challenging medical stuff. Oftentimes, as they get older, their condition is not the focal point of their life, but it’s ever-present,” she says.
While Armando has never attended Cleft Camp in person, he’s been a frequent attendee of the online camps and, before COVID-19, many in-person experiences for cleft patients and their families. For example, a few years ago, Armando, his parents and siblings attended a Nuggets game and were treated to a visit by the team’s mascot, Rocky. At another event, Armando and other cleft patients were treated to a backstage tour of the Denver Center for Performing Arts.
“It’s very gratifying to see these kids come to event after event. For a lot of them, it’s a big part of their social life,” Idelberg says.
Supported by generous donors, these events can be transformative experiences for kids like Armando. He credits Idelberg’s program for opening up his world to other kids to whom he can better relate.
“Jamie has been a major part of helping me step out of my shell these past few years, Armando says. “Before her, I never really got a chance to meet other kids that looked different like I do.”
Due to his disorder, Armando has undergone multiple procedures and surgeries to help improve his quality of life. He has also experienced the pain of negative attention just because his facial features are different.
“This group of cleft patients is so welcoming, accepting and nonjudgmental,” Idelberg says. “Sometimes they’ll talk about the bullies and the stares they get, and it breaks your heart, but then they’ll chime in and support each other. They are so insightful.”
Armando’s parents, whom he is very close to, have noticed a difference in their son, too.
“We have seen him flourish in the past few years,” says his mom, Miroslava. “He’s becoming more confident and outgoing. I don’t want him to doubt himself.”
His dad, Gerardo, adds, “My hope for Armando is that he continues to have a normal, happy life and that he knows he has no walls around what he can do.”
Armando Benefits from a Multidisciplinary Approach
Armando and his family have relied on the strength of a deeply experienced team at Children’s Colorado to help them navigate multiple complex surgeries and procedures throughout their journey. His multidisciplinary medical team includes pediatric specialists from plastic surgery, otolaryngology, dentistry and orthodontics, audiology, speech therapy and psychology.
Gregory Allen, MD, co-medical director of the Cleft Lip and Palate Clinic and member of the Complex Craniofacial Clinic at Children’s Colorado, has been part of that team since Armando was a few months old.
“Through the support of his wonderful family, Armando has grown into a very mature young man,” he says. “His resiliency through everything he’s faced has really been an inspiration to me.”
“I’m always a little bit nervous before a surgery, but I know my parents will be there for me and provide me a lot of comfort, and that it will be ok. And, I know my doctors will take good care of me,” Armando says.
Dr. Allen has no doubt that Armando, who wants to be a historian, has a bright future ahead.
“Every time I see him, I am amazed at how well he is doing in life,” he says. “I doubt that there is anything he will not be able to achieve. The craniofacial team at Children’s Colorado is incredibly thankful for kids and families like Armando’s who inspire us to continue doing the work that we do.”