Facing it as a family
Our weekly showcase of the wonderful world that is Truly. This issue, Becky Zingale, 34, tells us how her close family are thriving, even though they look different
Watching the ultrasound, Becky Zingale blurted out her one burning question. ‘Does she have ears, and cheekbones?’ she asked.
The technician laughed, told her ‘yes’, along with 10 fingers and 10 toes.
But Becky was serious. Because she knew there was a real chance that her firstborn child Chloe could have the rare craniofacial disorder Treacher Collins syndrome.
Her husband Duane, 36, had been born with the genetic condition, which affects the development of facial bones and tissue.
It meant that Duane had no ears, cheekbones or tear ducts.
He had 70% hearing loss and wore prosthetic ears.
It hadn’t stopped her falling in love with him, though.
In fact, the couple married in 2011, just a year after meeting at a leadership development programme in Idaho, USA.
And Becky credits his condition with making him the man he is.
She says, ‘When I met Duane, I didn’t know anything about Treacher Collins syndrome, I just knew his face looked different.
‘I realised that everything I liked about him, about his personality and character, all of that came from his life experience growing up with Treacher Collins syndrome.
‘If he didn’t have TCS, maybe he’d be a total jerk and then I wouldn’t like him.’
At their 20-week scan, they found Chloe was fine. But two years later, and pregnant for the second time, they were stunned when their doctors noticed facial abnormalities during a scan.
Their second daughter Ariasha was diagnosed with TCS while still in the womb.
‘I guess because we’d been there, done that, it wasn’t even in our minds.
‘I was just really thankful when Ariasha was diagnosed that she had Duane to look up to and we knew everything he’d been through,’ says Becky.
Despite the condition being genetic, Duane was the first in his family to be born with TCS.
He says, ‘I was born in 1984, so the knowledge about Treacher Collins syndrome was very new.
‘Growing up, I’d get, “What’s wrong with your face?”
‘I’d always fall back on self-deprecating humour to make light of the situation.
‘The advantage for me is it makes you extremely memorable – no one has ever, ever forgotten my face.
‘But, thankfully, it doesn’t affect your mental aptitude or your physical aptitude.’
Due to his ability to handle bullies, Duane never struggled to make friends.
‘I know I have a bit of a different face.
‘My ears are magnetically attached – I take them off when I go to sleep, or when I go swimming.
‘So sometimes it’s like being Mr Potato Head.’
Sadly, Duane thinks Ariasha will inevitably face bullies, like he did.
He says, ‘It’s going to happen, it’s part of life.
‘I think it’s giving her the
‘Bullying is going to happen. There’s a lot of staring’
tools to handle bullying when it happens. ‘There’s a lot of staring. ‘It’s really important for people to understand that everyone’s different.
‘It’s mostly just learning to tell your story. There’s nothing more powerful.’
Plus, Ariasha, now 5, has Chloe, 7, to back her up.
‘Chloe is just so confident and bold, so she doesn’t mind jumping in and answering questions and helping her sister,’ says Becky.
Both Duane and Ariasha use a bone-anchored hearing aid (BAHA).
To make wearing BAHAs more fun for Ariasha, Becky has started customising soft headbands to hold the hearing aids in place.
She’s also selling them to help other families whose children wear BAHAs.
She says, ‘I make custom headbands with velvet lining so it stays on really well, and it’s also soft and comfortable, with a lot of colour options so kids can match their outfits.
‘I think it helps a kid’s confidence to wear a headband they like.’
Becky is also writing a children’s book, Asha’s Little Ears.
She aims to bring hope to families of a new baby facing a challenging diagnosis by sharing an inside look into their journey.
And Becky is proud of the way Ariasha is following her daddy’s lead.
Becky says, ‘She does really well, navigating the world with hearing loss.
‘Basically, if she’s not wearing her hearing aids, I just have to talk like an angry man and she can hear me.
‘I don’t know if Ariasha has noticed that she’s different.
‘She’s noticed that
I’m different.
‘She asks, “How are you hearing with no hearing aids?”
‘She’s pretty convinced that her and Dada have super hearing and the rest of us are totally missing out!’