English Man Visits Local Families Dealing With Rare Syndrome

Jono Lancaster now knows he is a lucky guy, but he didn’t always realize that.

The 30-year-old Normanton, England resident was born with Treacher Collins syndrome, a  rare condition that causes problems while a fetus’ facial structure as it developing in the womb. He said the fact that his face looked different than his peers caused him to miss out on a lot of things growing up.

“My biggest disability growing up was my negative attitude,” he told LevittownNow.com. “I missed a lot of things my friends were doing, like girlfriends, when I was younger.”

At the age of 21 or 22, Lancaster realized his unique face wasn’t a setback but it allowed him to experience a lot of things he friends never would.

Years later, Lancaster lives with his girlfriend of nine years, has hosted various TV programs around the world and helps those less fortunate than him for a living. On Sunday, he made a stop in Fairless Hills to visit children born with Treacher Collins and their families.

Falls Township residents Matt and Nicole Killeen, whose 3-year-old son Logan was born with Treacher Collins, helped bring Lancaster to Bucks County after they learned he was taking part in a five-week tour of the United States to meet with families impacted by Treacher Collins.

“I honestly couldn’t sleep last night because I was so excited,” Nicole Killeen said. “I think I was more excited than Logan, he’s to young.”

Lancaster spoke to kids with Treacher Collins and their families about living a normal life with the syndrome that scientists say impacts 1 in 50,000 people. He made it clear that just because they look different, the children can lead normal lives and are just as intelligent as anyone else.

While Nicole Killeen knows there are challenges ahead, she said Lancaster’s visit made her feel optimistic for Logan’s future.

Lancaster told the small group of kids and parents impacted by Treacher Collins his story while visiting the Fairless Hills Fire Company station in Falls Township. He spoke of being given up by his birth parents at 36 hour old and adopted later by Jean Lancaster, a single mother who already had adult children of her own. He told them of the bullying while he was growing up and his own personal jealous that he admits held him back while he should have just lived his life.

“Everything,” he said, “has led me here and to all these special people.”

Willow Grove resident Melissa Hession, whose 6-year-old son Wilson was born with Treacher Collins, said Lancaster’s stop in Fairless Hills meant a lot to her family and her son. “It’s great to see the kids so excited.”

The kids got to spend time with Lancaster, enjoyed pizza and checked out the various fire trucks at the station on Hood Boulevard. The visit was organized by the Killeens and Falls Township Fire Marshal Rich Dippolito, who is Logan’s grandfather.

Lancaster is wrapping up his self-funded trip to the United States. He has toured all parts of the nation and visited those impacted by Treacher Collins. It’s a mission that he says he was born to fulfill and one he plans to continue in the years to come.

To donate to help fund Lancaster’s trip, click here.