The man who finally has a face
After 21 years and 12 major operations, Jake is finally ...
The incredible story of Jake Westbury and his 21year quest to rebuild his appearance
JAKE Westbury finally has a face. An unremarkable face. And he’s very happy about that.
But it has taken a 21 year-long journey involving more than a dozen major surgeries, the 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 had only earlobes, not the rest of his ears. He was also born with a cleft palate, making it difficult to eat and breathe.
But what he did have were amazing parents in Rona and Mick, who lovingly guided a son 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 children with Treacher Collins.
“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 regimens,” Prof David said.
Operations are performed according to age and stage of development.
“The first series of operations consisted of aligning Jake’s 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 basis of a new movie starring Julia Roberts, Owen Wilson and young Jacob Tremblay — Jake was acutely aware he looked different to other children.
But, remarkably, he took it all in his stride.
“Having Treacher Collins was normal for me because I didn’t know any other way of living,” Jake said.
“But you always have people out there that would make fun of me.
“They would call me spastic or retard. I just laughed it off because I didn’t want to give them the satisfaction.
“But it was very rare that it happened and they knew I didn’t care.
“I was lucky to have the best group of mates during high school.”
Dealing with the pain he endured during his various operations, he credited good drugs.
“The pain was reasonable thanks to the painkillers,” he said. “I cope with the surgery well.” The last of his many surgeries were the ones in which Prof David finally gave Jake his forever face, the one with which 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 — says he has a new lease on life. “It’s allowed me to smile.” he said. “I’m so glad I’ve had the surgery, I am happier and I feel more confident.
“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.
“I’m proud of him, I think he looks amazing,” she said.
“He says he has a disadvantage, not a disability.
“In all his school photos he never smiled, now he laughs and jokes and smiles and I’ve noticed the change.”
Jake has spoken out in support of other kids with Treacher Collins, hoping to help them to be prepared for the long road towards a face which doesn’t attract stares, or worse.
“It is a long journey ahead,” he said.
Jake Westbury can finally smile after many surgeries.
Julia Roberts in the movie ‘Wonder’.
Jake Westbury’s changing face over the years.