INSPIRATION: Zack Walton with Jono Lancaster, who also has Treacher Collins syndrome and who is visiting from the UK to educate people about the disorder. Picture: NOELLE BOBRIGE Source: News Limited
JONO Lancaster admits it took him more than two decades to love his face, but now he wouldn’t change it for the world.
The 30-year-old has made it his mission to inspire others with Treacher Collins syndrome — a genetic disorder which prevents the skull, cheek and jawbones from developing — to love themselves, too.
Mr Lancaster, of West Yorkshire, is one of the world’s most famous people with Treacher Collins.
He flew to Adelaide on Wednesday to meet Zackary Walton, 2, of Mannum, who also lives with the same incurable condition.
“I grew up with Treacher Collins and I kind of felt like I was on my own and I felt like I was the only one out in the world that was like me,” Mr Lancaster said.
“People are lucky enough to win the lottery or they become professional footballers, doctors, lawyers but (I thought): ‘Why did I have to end up looking like this?’”
Mr Lancaster, who has been the subject of documentaries about his condition, is in the state as part of a three-week Australian tour aimed at educating the public about the little-known disorder.
He is also meeting children across Australia who live with the condition, telling them they can achieve whatever they want in life.
“I would have loved to have met somebody like myself when I was younger … somebody who had got a job, got a partner and said to me ‘these are the things you can do, you can achieve’,” he said.
The Advertiser first met Zackary two weeks ago, when his mother Sarah Walton was fighting to have government funding reinstated for a nurse to help care for her son one day a week. Zack needs a tracheostomy tube to keep him alive.
The day after The Advertiser published a story on the family’s plight, Ms Walton said she was informed the service would continue.
“Thank you so much … without the story in The Advertiser they (the government) wouldn’t have done it so quickly,” she said.
Ms Walton contacted Jono on Facebook and said she had always dreamed of the day her son would meet his hero.
“He (Jono) is a celebrity to us — he’s a huge inspiration,” she said.
“When he said he was coming to Australia, we knew we had to meet him and it’s made us so happy to see Zack meet someone like him.”
Next year, Zackary will undergo a series of operations at the Women’s and Children’s Australian Craniofacial Unit, including one to break his jaw in the hope it will help him breathe more easily.
Today, Zack and the Walton family will spend time with Jono and his partner, Laura Richards, 24, in Mannum.
“We’re hoping to do a school visit, we’re going to go down a river and go out to the Pretoria Hotel, maybe chuck a line in (to the river) or visit the waterfalls,” Ms Walton said.
Originally published as Brave Zack meets his hero