The staff at Julia’s House has been thanked for caring for 12-year-old Johnathon diagnosed with a complex and incurable genetic condition.

Johnathon Lock was born with his tummy connected to his lungs and doctors told his mum Leanne he was not going to make it out of neonatal intensive care unit.

Leanne, from Salisbury, said: “It was very hard and we felt helpless, but we believed he’d keep fighting and we still do.”

Johnathon has a condition called CHARGE syndrome, which cause a range of physical and health problems.

His heart was not formed properly in the womb, so he has needed several heart surgeries since he was little and is likely to need more.

He also does not have an airway and cannot swallow, so he has a tracheotomy to help him breathe and he has to be tube fed.

“Even now, Johnathon can stop breathing up to 30 times a night,” said Leanne. “He’s on a monitor that measures his heart and oxygen levels, and when they get too low the alarm goes off.

“My heart just sinks when I hear it, and 12 years on it’s still scary. If I can’t give him oxygen, I have to try to wake him a little, so he’ll breathe again. The whole time I’m thinking, “Take the breath. Come on, you need to breathe.” Sometimes I don’t like to go to sleep because I am scared of losing him.”

She added: “There’s a lot that Johnathon can’t do, but there’s also so much that he can – having CHARGE doesn’t hold him back.

“He’s hearing and vision impaired, which affects his balance. But that doesn’t stop him from tearing around on his scooter with his younger sisters or playing pranks on us when he thinks we’re not looking. He’s very cheeky and fun to be around.”

Because of his complex condition, Johnathon needs round-the-clock attention from someone who is trained to care for him.

“When Julia’s House comes that’s the only respite we get at home, and they are amazing,” said Leanne. “Johnathon gets 2:1 attention and they’ve got time to do messy play and baking with him. It makes him happy, and I love to see him laugh and joke around – he’s a different child when they visit.”

She added, “The worry is always there with Johnathon in case he stops breathing, or his heart decides to pack up. It took me a long time to trust anyone, but I trust our Julia’s House nurses 100% with Johnathon, and I don’t know what we’d do without them. They make everything that we’re going through feel normal, and I think our normality would disappear if Julia’s House disappeared.”