As reported in MSN, Duane Zingale explained that one aspect of being born with Treacher Collins syndrome is that you’re extremely memorable. Duane was born without ears or cheekbones. He said to MSN news, “No one has ever, ever forgotten my face. But thankfully [the disease] does not affect your mental aptitude or your physical aptitude.”
Treacher Collins Syndrome
Treacher Collins syndrome is a rare genetic condition known for its distinctive head abnormalities. People with this condition have a very small chin and jaw, and underdeveloped cheekbones. The disorder ranges in severity, causing some people’s cases to be very mild and to go undiagnosed, while more obvious cases are diagnosed at birth or earlier. Symptoms include a small jaw, small chin, undefined cheekbones, a cleft palate, downward turned eyes, hearing loss, small or absent ears, respiratory issues, vision loss, and difficulty eating. While there is no cure, there are various therapies that work symptomatically, such as hearing aids, surgeries, and breathing aids.
Duane and His Daughter
While being born without ears meant Duane was born with irreversible hearing loss, the wonders of the 21st century came through. With the help of prosthetic ears and hearing aids, he can now hear at 30% capacity, and started a family after meeting his now-wife Becky at a leadership development conference.
His relationship with the disease changed after their second daughter, Arisaha, was diagnosed with the condition while his wife was pregnant with their second daughter. She too would learn to live with hearing aids and physical adjustments. For his wife, knowing that Arisaha would have her father as a role model and mentor to guide her through a life with TCS was enormously comforting. Becky said to MSN,
“I was just really thankful when Ariasha was diagnosed that she had Duane to look up to.”
Creating a disease community and progress became an important goal for the family. The Zingale’s created a picture book made to illustrate the variety of facial differences as an educational tool for children, and have produced headbands that support hearing aids. For Duane, it’s most important that people get that everyone’s different, and part of making that happens means telling your story.
“There’s nothing more powerful,” says Duane.
