The man who fi­nally has a face

Af­ter 21 years and 12 ma­jor op­er­a­tions, Jake is fi­nally ...

The Sunday Telegraph (Sydney) - - NEWS - JANE HANSEN

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.

Pic­ture: Troy Snook.

Jake West­bury can fi­nally smile af­ter many surg­eries.

Julia Roberts in the movie ‘Won­der’.

Jake West­bury’s chang­ing face over the years.

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