Jono Lancaster. Photo from Jono Lancaster’s Facebook account
MANILA, Philippines—A British man afflicted with a rare and incurable genetic disease recently flew to Australia to meet a two-year-old boy as part of a mission to inspire children who share his condition.
Briton Jono Lancaster, 30, who was born with Treacher Collins syndrome, went to Adelaide to meet Zackary Walton, who had the same condition as him.
Treacher Collins hampers the development of the facial bones and tissues, resulting in “underdeveloped cheekbones and very small jaw and chin.” About 1 in 50,000 people is afflicted by it.
Lancaster has been featured in various documentaries in the United Kingdom and is an ambassador to various non-government organizations and charities such as GeneticDisorders.UK and LifeForAKid.
Sarah Walton, Zackary’s mother, contacted Lancaster through Facebook to ask if he could meet the toddler, who considered him his hero.
“He (Lancaster) is a celebrity to us — he’s a huge inspiration,” Walton told the Adelaide Advertiser.
“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,” she added.
Lancaster stressed the importance of meeting other children who have Treacher Collins to know that they were not alone and could grow up and achieve what they set out to do.
“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,” Lancaster said.
“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 added.
Aside from meeting Zackary, Lancaster also met with other kids with Treacher Collins as part of a three-week tour in Australia and New Zealand to educate the public about the rare disorder.
Last Monday, he posted on his Facebook account about his experience during his trip.
“Been back in the UK now for a week, still can’t believe what we’ve achieved – 1 month, 2 countries, 14 flights, countless memories and so many special people,” Lancaster said.
He recounted that 10 years ago he had difficulty accepting his disability but had learned to love himself.
“Ten years ago, despite [having] been loved and adored by so many, I hated my Treacher Collins, I hated my face. ‘Why me?’”
“But right now … I feel truly blessed. I love [having] been me and all that I am,” he ended.
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