A Smile Ambassador: Glenwood Springs Freshman Helps Promote Orofacial Cleft Awareness

Glenwood Springs High School student Willy Sikora practices a new song on the violin at home after school. Sikora plays violin in the Roaring Fork Youth Orchestra.
Chelsea Independent/Post Independent

If Willy Sikora isn’t strumming his fiddle along Main Street on Carbondale’s first Fridays, he usually attends Glenwood Springs High School’s junior reserve officer training corps or, in the winter, learns to ski telemark.

“The trees and the powder are a really satisfying experience,” he said.

Nestled among his love for Beethoven or exploring his interest in aeronautics by joining a flight instructor in the cockpit of a small single-engine propeller plane (he recently did) is a huge calling.



In July, the high school freshman attended an Operation Smile Student Programs international student leadership conference in Miami. Operation Smile is a global non-profit organization that provides cleft palate repair for children.

And, recently, Sikora was named a student ambassador for a Colorado Cycle for Smiles event that took place Saturday in Basalt. The event, which was to raise $5,000 for Smiles, invited cyclists to cycle 40 miles through the peaks and valleys of the Roaring Fork Valley.



Sikora, 15, was born with a severe bilateral cleft lip and palate. He was assigned to deliver a speech before the start of Saturday’s event.

Orofacial clefts occur before birth, according to the US Centers for Disease Control and Prevention. When the tissues and cells of the body form a baby’s face between 4 to 7 weeks pregnantsometimes the skin does not fully join the lips.

According March of Dimes (US statistics):

  • About 1 in 1,600 babies are born with cleft lip and cleft palate;
  • about 1 in 2,800 babies are born with a cleft lip without a cleft palate;
  • approximately 1 in 1,700 babies are born with a cleft palate.

But not everyone born with these conditions is fully treated, and Sikora has made that obvious.

“Worldwide, it is estimated that every 3 minutes a child is born with a cleft condition,” he had prepared in his speech. “Unfortunately, millions of people around the world live with untreated fissures because they don’t have the financial resources for surgery or the availability of safe, high-quality medical treatment.”

It can mean enduring years of bullying, social isolation and serious health issues from an untreated cleft, Sikora’s speech continues.

“(I want) more awareness of certain issues,” he said. “Also, ask people what they are doing to help address these issues.”

HIS EXPERIENCE

His biological mother could not feed her baby boy for a few days.

A severe bilateral cleft lip and palate prevented him from breastfeeding successfully and he aspirated his milk.

Often, children born into difficult circumstances in China are abandoned in city parks or near police stations. Usually they are also girls, as China is a patriarchal society.

It wasn’t long before this beleaguered couple decided it was best to go to a children’s hospital in Kunming City, China. There they got their little boy admitted. Then they were gone.

“I was in the hospital with pneumonia,” Sikora said. “The last thing I know happened to them is that they disappeared.”

He was almost dead when he was abandoned by his biological parents that day. However, suffering from severe malnutrition and pneumonia, practitioners successfully brought him back to life.

“I guess once he was healthy,” said Patti Braceland-Sikora, his adoptive mother, “the orphanage came to pick him up.”

He was born while China’s one-child policy, repealed in 2016, was still in effect. However, in more rural areas, it was not uncommon for couples to keep their second child, that is, if the baby had no physical and mental defect. Its inherent orphanage housed 600 children. About 90% of these children had special needs.

Glenwood Springs High School student Willy Sikora practices a new song on the violin at home after school. Sikora plays violin in the Roaring Fork Youth Orchestra.
Chelsea Independent/Post Independent

Sikora was eventually placed in foster care. Months later, Roaring Fork Valley couple Patti Braceland-Sikora and John Sikora adopted him. Once everything was finalized, Patti said they visited her old orphanage one last time.

“It was his first birthday, and it was wonderful,” she said. “Everyone who saw him ran up to us, hugged him and played with him, and he laughed.

“He was a very famous little boy.”

UNDER THE KNIFE

They say 13-month-old Sikora acquired the nickname “Wild Bill” from his first operation. Persistent fits of screaming caused her sutures to tear – a row of stitches holding pieces of skin together.

Truly, he was affectionately given his nickname when he first arrived from China and was taken to a doctor’s office in Grand Junction. Unsurprisingly, the room was rocked by Sikora’s screams and screams until he left.

“I think it’s funny,” he said. Surgery is not a fun activity, so her vocal disdain is natural. “I think it’s a very fitting nickname.”

Still, he had to undergo several surgeries to alleviate his serious condition. Just recently, he underwent surgery to remove bone grafts from his hips to repair part of his cleft. As a result, he suffered greatly. Her weakened legs caused difficulty in walking.

In order to fix his speech, he still has to undergo a soft palate revision. According to the National Library of Medicine, this is an additional procedure involving a surgical knife. But, with her bone grafting procedure still fresh in her mind, Sikora is understandably hesitant.

“It was particularly traumatic for me,” he said. “I couldn’t eat solids for a month.”

LUCKY DUCK

Patti and John married late in life. That doesn’t mean they didn’t want to have kids. The adoption struck their interest.

John works for an infrastructure company, while Patti, by fate, happens to be an orofacial myologist. These doctors, of course, deal with the treatment of oral and facial muscles.

“One of my patients at the time was a baby girl adopted from China,” Patti said. “I spoke to the family about their process and the agency they went through, and we decided to go ahead and move forward with an adoption.”

Glenwood Springs High School student Willy Sikora pushes his bike around the front yard before an after school ride. Sikora was named a student ambassador for the Operation Smile cycling event in Basalt on September 17.
Chelsea Independent/Post Independent

In 2008, she learned the adoption was in the works but only had 48 hours to say ‘yes’ or ‘no’ to the adoption. For them, no was not an option, and the couple from Glenwood Springs immediately traveled to Kunming, in China’s Yunnan province, to meet their orphaned son, Xi WenHao.

What’s special about this is that not only was Sikora adopted, since Patti is a doctor, he was connected to many critical sources to improve his condition: oral surgeons, otolaryngologists, medical providers from his hometown.

And, of course, Patti herself has extensive knowledge of human muscle biology.

“I had the relationships,” she said. “I knew the doctors, I knew the ENTs, the plastic surgeons, the dentists, the orthodontists. This is one of the things you need to do when pre-adopting a Chinese child with special needs.

“You have to build a team. »

A THIRST FOR LIFE

Patti said she loves that her son is “just going for life.” She admires that when her son decides to do something, he just does it and nothing holds him back. Most importantly, he doesn’t let his past dictate his future.

Sikora agreed.

“After surgery, being able to come back and get back to normal and do what you were doing and pursue what you want to do,” he said, “it’s a lot of perseverance and determination.”

Christine E. Phillips