Dad born with no cheekbones due to genetic disorder is role model for his daughter after she inherited the same rare condition

Duane and Becky with daughters Chloe and Ariasha.

A dad who has no cheekbones due to a rare genetic disorder hopes to be a role model for his two-year-old daughter – after she inherited the same condition.

Duane Zingale, 33, was born with no ears and undeveloped facial bones due to Treacher Collins Syndrome (CTS), which affects one in 50,000 children.

The marketing consultant decided to start a family with his wife Becky, 32, despite there being a 50 per cent chance he would pass it on.

Becky and Duane’s engagement photo.

Their eldest daughter, five-year-old Chloe, did not inherit CTS but their second child, Ariasha, was born with a mild case.

Like her dad, Ariasha suffers vision loss, wears hearing aids because she is partially deaf and is missing a large portion of her cheekbones.

The toddler also has a small chin and was born with a cleft palate which was corrected when she was 16 months old but is otherwise healthy.

While Duane and Becky have been quizzed on their decision to have children by strangers online, they are focusing their efforts on teaching Ariasha to love herself.

He said his little girl will “100 per cent thrive” despite fearing she might not feel pretty or accept herself until the age of 30.

(Left) Ariasha and Chloe.

The proud dad, of Bend, Oregon, US, said: “Growing up, the most common question people asked was, ‘Why do your eyes look so funny?’.

“The curiosity never really bothered me and having Treacher Collins has been a completely positive experience.

“I don’t feel like I have ever been treated differently because I have come at it with confidence. It hasn’t ever held me back. If anything, it has pushed me forward.

“I didn’t think about having children as a teenager but around the age of 22 or 23 it became a deep sense of longing and I really did want a family.

“At first I wondered if I should adopt instead. I had the thought, but by the time Becky and I got married I was more and more OK with it.

“It became less of a concern, partly because I became more and more comfortable in my own skin and I have dealt with it myself.

Mum Becky with Ariasha.

“There’s a 50/50 chance of passing it on so I knew if I had two kids, one of them would probably have it. We took a step of faith.

“When Ariasha was in the womb and we initially found out she had TCS, it was scary.

“Our greatest fear was, ‘Will she breathe when she is born?’ The craniofacial stuff is like, ‘Sure, you look different,’ but if you don’t breathe and there is mental stuff, it is harder.

“It was a great sense of relief when she was breathing.

“It will be an interesting journey for her. There will be a time when she will say, ‘Boys are looking at me funny,’ and, ‘Will they like me?’

“I have a girl and I have no idea what that is going to be like. That is a little bit like, ‘When is she going to realise, “I’m not pretty because I don’t look like everyone else?”‘

“Certainly we feel blessed and it has been an amazing journey so far.

“People have been inquisitive – even my own father said, ‘Are you sure? Are you ready?’ but no one has ever been nasty.

Duane in the 1990’s.

“I have seen it online, people saying, ‘Why would you have kids when you know you are going to pass it on?’ but others say, ‘It is so brave of you.’

“It might take until she is 20, 25, 30 years old but Ariasha can totally thrive on her journey of discovery, finding who she is and how this plays a part in her life.

“I have no doubt she will 100 per cent thrive, and it’s my deepest desire to be a role model for her – for both my girls. That would be an amazing gift.”

Duane was diagnosed with TCS at birth and by age three had undergone surgery to correct his cleft palate and to try and graft cheekbones using bone from his forehead, which was unsuccessful.

At 15 he was fitted with prosthetic ears which gave him more confidence and after overcoming doubts that women would not find him attractive, he began dating aged 17.

In 2010, Duane and Becky fell in love after meeting through a missionary organization.

The couple married in 2011 and had their first daughter, Chloe, in 2013.

Becky fell pregnant with their second child, Ariasha, in 2015. She says she “didn’t worry” about Treacher Collins until a 20-week scan indicated the baby might have it.

Becky said: “After the ultrasound, some specialist called me and said, ‘You do realize that because your husband has this, your baby has a 50 / 50 chance.’

“It kind of felt like she was saying, ‘So what were you thinking getting pregnant? Why did you get pregnant when you knew there was 50 /50 chance of that happening?’

“I cried. It was scary. I think I would have felt a little better if it was a boy, but girls care about how they look.

“But it was like, she is going to look like her dada, she has got someone to look up to.”

In some cases, Treacher Collins can cause breathing difficulties which can be serious if blood flow to the brain is affected.

Duane and Ariasha soon after she was born.

Ariasha has hearing loss and underwent surgery to repair her cleft palate, but Becky said she always thought about how much worse it could be.

She added: “I’m really thankful she is as mild as she is.

“People ask if we are going to have more kids and we are like, ‘Nope.’ I don’t want to have a third kid because we are aware of the risk.

“Some day we want to adopt kids.”

Becky, who runs a business making headbands for children with hearing aids and blogs about her family at The Baha Mama, added: “She is like normal kid.

“She can do everything a normal kid does, and she has her dada so having Treacher Collins is not a big deal.

“I don’t think she notices she is different at this point and I don’t know what age she will start noticing, but we want her to accept herself and be comfortable and confident in who she is.

“We have treated her like any other child. I want both my kids to face challenges and overcome them.”


Please enter your comment!
Please enter your name here