Glenwood Springs freshman helps promote orofacial cleft awareness
Aspen Times
If Willy Sikora isn’t strumming his violin along Main Street on First Fridays in Carbondale, he’s usually participating in Glenwood Springs High School Junior Reserve Officers’ Training Corps or, in winter, learning how to telemark ski.
“Trees and powder is a really satisfying experience,” he said.
Nestled amongst his love for Beethoven or exploring his interest in aeronautics by joining a flight instructor in the cockpit of a small, single-engine prop plane (he did that recently) is a huge calling.
In July, the high school freshman participated in an Operation Smile Student Programs International Student Leadership Conference in Miami. Operation Smile is a worldwide nonprofit that provides cleft and palate repair for children.
And, recently, Sikora was named Student Ambassador for a Colorado Cycle for Smiles event that took place on Saturday in Basalt. The event, set to raise $5,000 for Smiles, invited riders 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 tasked with giving a speech prior to the start of Saturday’s event.
Orofacial clefts happen before birth, according to the U.S. Centers for Disease Control and Prevention. When body tissue and cells form a baby’s face between 4-7 weeks into a pregnancy, sometimes the skin doesn’t completely join at the lips.
According to March of Dimes (U.S. stats):
About 1 in every 1,600 babies is born with cleft lip and cleft palate;
about 1 in every 2,800 babies is born with cleft lip without cleft palate;
about 1 in every 1,700 babies is born with cleft palate.
But, not everyone born into these conditions get fully treated, and Sikora made this apparent.
“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 are living with untreated cleft conditions because they don’t have the financial resources for surgery or the availability of safe, high quality medical treatment.”
This can mean enduring years of bullying, social isolations and severe health problems because of an untreated cleft condition, Sikora’s speech further reads.
“(I want) more awareness to these certain problems,” he said. “Also, asking people what stuff they’re doing to help fix these problems.”
HIS EXPERIENCE
His birth mother couldn’t nurture her days-old baby boy.
A severe, bilateral cleft lip and palate prevented him from successfully breastfeeding, and he aspirated her milk.
Many times children born into difficult circumstances in China are abandoned at city parks or near police stations. Usually, it’s girls, too, since China is a patriarchal society.
It wasn’t long before this beleaguered couple decided it best to visit a children’s hospital in Kunming City, China. There, they had their baby boy admitted. Then, they were gone.
“I was in the hospital with pneumonia,” Sikora said. “Last thing I know that happened to them, they disappeared.”
He was nearly dead when he was abandoned by his biological parents that day. Severely malnourished and suffering from pneumonia, however, practitioners successfully brought him back to life.
“I’m supposing once he was healthy,” Patti Braceland-Sikora, his adoptive mother, said, “the orphanage came and got (him).”
He was born when China’s one-child policy, rescinded in 2016, was still in effect. Yet, for more rural areas, it wasn’t uncommon for couples to keep their second child — that is, if the baby didn’t have a physical and mental defect. His inherent orphanage housed 600 children. About 90% of those children were special needs.
Sikora eventually went into foster care. Months later, Roaring Fork Valley couple Patti Braceland-Sikora and John Sikora adopted him. After everything was finalized, Patti said they visited his former orphanage one final time.
“It happened to be on his first birthday, and it was wonderful,” she said. “Everybody that saw him ran to us, took him out of our arms and played with him, and he laughed.
“He was a very well-known little boy.”
UNDER THE KNIFE
They say Sikora, at 13 months old, acquired the nickname “Wild Bill” from his first surgery. Persistent screaming fits caused his sutures — a row of stitches holding pieces of skin together — to rip.
Really, he affectionately got his nickname when he first arrived from China and was taken to a Grand Junction doctor’s office. Unsurprisingly, the room was serenaded by Sikora’s screaming and yelling until he left.
“I think it’s funny,” he said. Surgery isn’t a fun activity, so his vocal contempt is natural. “I feel it’s a very appropriate nickname.”
Still, he needed to undergo multiple surgeries to mitigate his severe condition. Just recently, he underwent a procedure that took bone grafts from his hips to repair part of his cleft. Following this, he was in great pain. His legs weakened, caused difficulty walking.
In order to fix his speech, he still needs to undergo a soft palate revision. According to the National Library of Medicine, this is an additional procedure involving a surgical knife. But, with his bone graft procedure still fresh in his mind, Sikora is understandably hesitant.
“That was particularly traumatizing 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 children. Adoption struck their interest.
John works for an infrastructure firm, while Patti, by fate, just so happens to be an orofacial myologist. These doctors, of course, deal in the treatment of oral and facial muscles.
“One of my patients at the time was a little girl adopted from China,” Patti said. “I talked to the family about their process and what agency they went through, and we decided to go ahead and go forward with an adoption.”
By 2008, she received word that the adoption was a go but was given only 48 hours to say “yes” or “no” to the adoption. For them, no wasn’t an option, and the Glenwood Springs couple immediately went to Kunming City, in China’s Yunnan Province, to meet their orphaned son, Xi WenHao.
What’s special about this is, not only did Sikora get adopted, since Patti is a medical practitioner, he was connected to so many critical sources to improve his condition: oral surgeons, ear, nose and throat doctors, hometown medical providers.
And, Patti, of course, herself carries an expert knowledge of human muscular biology.
“I had the connections,” she said. “I knew the doctors, I knew ENTs, plastic surgeons, dentists, orthodontists. That’s one of the things you have to do when you are going to adopt a special needs child from China ahead of time.
“You have to have a team put together.”
A LUST FOR LIFE
Patti said she loves the fact that her son “just goes for life.” She admires that when her son decides to do something, he just does it and nothing holds him back. More importantly, he doesn’t let his past dictate his future.
Sikora agreed.
“After surgery, to be able to come back and get back to normal and doing what you used to and pursuing what you want to do,” he said, “it’s a lot of perseverance and determination.”