Johnathon was born with his tummy connected to his lungs (says Mum, Leanne). They said, “Don’t expect too much. He’s not going to make it out of NICU.” It was very hard and we felt helpless, but we believed he’d keep fighting and we still do.

Johnathon has a very complex and genetic condition called CHARGE syndrome. Each letter represents a different medical and physical issue that you could have with the condition, and Johnathon has got nearly all of them.

When he was just seven hours old, Johnathon had a major operation to try to re-connect his tummy with his oesophagus but it didn’t work. His oesophagus sits on the outside of his neck now. He can’t swallow and he doesn’t have an airway, so he has a tracheotomy to help him breathe and he has to be tube fed.