After 21 years and 12 surgeries, Jake Westbury now has a face after being born with Treacher Collins syndrome
IT’S taken major operations to get his “forever face” but Jake Westbury finally likes what he sees in the mirror after being born without features thanks to Treacher Collins syndrome.
NSW
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AFTER 21 years, Jake Westbury finally has a face.
But it has taken more than a dozen major surgeries, as well as extraordinary support from his family and enduring the misguided judgment of a world obsessed with beauty.
Jake was born with Treacher Collins syndrome, a genetic disorder that affects about one in 50,000 children. It prevents the skull, cheeks and jawbones from developing properly, causing facial defects and hearing loss. Jake only had earlobes, not the rest of his ears. He was also born with a cleft palate, making it difficult to feed and breathe properly.
But what he did have were amazing parents in Rona and Mick who lovingly guided their son, who they consider “completely normal to us” through life.
On one of her first outings with baby Jake, Mrs Westbury said a rude woman asked: “Oh my God, what is wrong with him?”
Rather than hide away, she did the opposite.
“I just put him on my shoulders and went shopping and anyone that wanted to stare could,” she said.
When he was three they met Professor David David from the Australian Craniofacial Unit in Adelaide. Prof David is a world leader in the complete care of a Treacher Collins child.
“The very first thing that had to happen was to establish hearing because of his absent ears and at the same time to establish feeding and breathing regimes,” Prof David said.
Operations are performed according to age and stage of development.
“The first series of operations consisted of aligning his eyelids and reconstructing part of his eye sockets.
He then proceeded to have extensive orthodontic management and ultimately surgery to his jaws and further surgical intervention to assist with his speech,” Prof David said.
Like the 10-year-old boy with Treacher Collins syndrome in the hit book Wonder — which is the basis of a new movie starring Julia Roberts, Owen Wilson and a young Jacob Tremblay — Jake was acutely aware he looked different to other children.
Now, 18 years on, Prof David has finally given Jake his forever face, the one he fronts the world with pride.
Earlier this year, he had his jaw reconstructed. Then, in another major operation, Jake’s new cheek bones were fashioned out of his own ribs.
His teeth, for the first time in his life, now align so that he can finally smile. The 21-year-old, who works two jobs — at Coles and a service station — said he has a new lease on life.
“It’s allowed me to smile, I’m so glad I’ve had the surgery, I am happier and I feel more confident,” he said.
“Professor David, his work is amazing, he’s got massive hands, and he has done well.
“I reckon it has changed my life. I feel I can talk to people more easily and I don’t get looked at as much, I’m more hidden in the crowd now.”
Mrs Westbury said her son has never felt sorry for himself and made it through childhood without being picked on.
“I’m proud of him, I think he looks amazing,” she said.
“He says he has a disadvantage, not a disability.
“He’s just a great kid with a great attitude and if anyone doesn’t accept him, he thinks they are not worth knowing.
“In all his school photos he never smiled, now he laughs and jokes and smiles and I’ve noticed the change, people say he looks really good.”