Treacher Collins syndrome is caused by a genetic defect in the fifth chromosome, the gene that affects facial development. Jono doesn't have any cheekbones, and his hearing is damaged because of it. But despite his sad start in life, God had a plan for this baby.
The hospital where he was born contacted a woman named Jean and told her about the abandoned baby. According to the adoption service papers, Jono's birth mother "was horrified by the child's physical appearance and experienced no maternal bond. She discharged herself from the hospital some 36 hours later."
Jean responded in a totally opposite manner saying, "How could you not love a child?" She took one look at me and said, "Let's make this happen!"
For five years Jean fostered Jono. She continually tried to get in contact with his birth parents and send them updates, but all letters were returned unopened. So, Jean adopted him.
It was around age 7 that Jono realized he was different from other kids his age. Children tried to avoid him, afraid they would catch his disease.
"I was desperate to have friends, I'd do anything. I had no confidence. I'd buy lots of sweets and give them to the other kids so that they'd like me," said Jono to BBC. "I ended up doing stupid things so that people would talk about me for a different reason to the way I looked. I set a firework off in class, I got up to no good. It was quite often alcohol related, I got quite a bad reputation amongst other mums and teachers."
Loneliness plagued the deformed boy, but he did have at least one friend, Ben.
"Ben worked in a bar. One day he said, 'Dude, you have to come with me. It's a good life. You get drunk while working and then go out,'" said Jono at National Organization for Rare Disorders (NORD) Conference. "So I got my uniform and started working. On that night I could have passed out, it was so scary. But I was proud of myself. All I could see was people making fun of me. I lasted 3 hours. People couldn't order drinks, they were laughing so hard. I wanted to disappear."
Jono wasn't planning on returning, but Ben told him he should. One day a man came in and asked Jono about his face. Jono explained why his face looked the way it did and why he had hearing aids. He recounted the embarrassing conversation that resulted in a life-changing and positive moment:
Jono: "I was embarrassed. 'I'm deaf.' I showed him my hearing aids."
Man at the bar: "Do they come with an off switch? You're lucky. I have a wife and all she does is talk 24/7, and to be able to switch her yakking off..."
Jono: "And he was laughing with me. Not at me. Then he bought me a drink. I'll never forget it. It's amazing how someone can say a simple thing and it can change your world forever. After that, I started to focus on the good."
Jono's job at the bar helped him gain confidence in his looks. He started dating and working out at the gym. He studied sports science in college and at the age of 23, got a job at a Fitness First gym.
While he was at the gym, he met a woman named Laura Richardson.
"I was testing her resting heart rate and it was beating over a hundred beats a minute, so I thought she must have liked me!" Jono told BBC. "She says when she first met me, she noticed my face, but now she no longer sees it. It was the first time I was able to be completely myself with a girl."
He did eventually forgive his biological parents, and he started to look for them. He documents his journey in a documentary, Love Me, Love My Face. But his birth parents didn't want to meet him.
"I thought things might have changed. That they might want to know I was happy. It was awful. Awful. I cried and cried. But I have come to terms with it. It must have been one of the hardest decisions they ever had to make," Jono said. "I found out they've gone on to have two more children. I'm glad they have got a family. I'm happy, I hope they are happy too."
Today Jono travels the world, sharing his story and helping other children struggling with the same difficulties.
"I'm proud of who I am. And Treacher Collins made me who I am today," said Jono.
Jono's great story teaches us that, in a cruel world, there are always people willing to help and give love. Despite the suffering in his life, Jono didn't hesitate to offer help to those who need it. We can all do more to share and show more love.
Stacie Simpson is a FamilyShare staff writer. She loves listening to, gathering and sharing stories and advice to help others improve their quality of life. She spends most of her free time with her husband, ballroom dancing, reading and writing.