Johnathon's story | Julia's House

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.

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Even now, Johnathon can stop breathing up to 30 times a night. 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.” That’s what my nights are like – it’s emotionally and physically exhausting. After a few bad nights in a row, I worry in case I go into a deep sleep and don’t hear the monitor go off. Sometimes I don’t like to go to sleep because I am scared of losing him.

He’s more settled now, but in Johnathon’s first months, we spent more time in hospital than we did at home. He was a real pickle and always getting some sort of infection or problems with breathing. We were busy every day caring for him, so there was never time to stop and think – it helped me to block my feelings out. I think I would have had a nervous breakdown otherwise.

Johnathon’s heart wasn’t formed properly in the womb, so he’s needed several heart surgeries since he was little and probably always will. One of the worst days was when he had to go for emergency heart surgery when he was just three months old.

I remember carrying him down the corridor towards the operating theatre. I didn’t want him to go on the hospital bed, so I carried him down and Simon took him in. He was in surgery for seven hours and when we got the call we thought it was all done, but it had been so difficult that they’d collapsed his lung. He needed 48 hours on medication before they could try again.

After Johnathon’s surgery they took him off the ventilator and we were told he was okay and to bring his older sisters in to see him. I always remember the consultant’s red trousers and how he was sat in his chair. Just as we brought the girls in, Johnathon started to have a cardiac arrest. All the nurses and doctors were rushing in and they had to intubate him. It was terrifying. Jade was 12 years old then. She doesn’t remember visiting Johnathon all the other times in the NICU ward – that’s her earliest memory of her brother.

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.

Johnathon can’t talk and we’ve never been told why. Instead, he makes syllable sounds and uses sign language, so we can understand him. He also wears a special hearing aid called a baha which turns his skull into a speaker. Without it, he wouldn’t be able to hear at all.

He used to rip it off constantly, but one day he decided to wear it. We went on a hearing day and he wanted to hear everything – the birds, the buses, the sound of muddy puddles splashing. We went to the supermarket and he asked the trolley collectors to crash the trolleys together for him. They kept crashing them and he was just laughing and laughing. He’s worn his hearing aid every day since then.

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. 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.

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.

Johnathon’s younger sisters Sophie and Megan love Julia’s House too. They have their own sibling support, which is brilliant. And when Johnathon’s got a Julia’s House sit planned, the girls always have their list ready for what they want to do with me and Simon. It’s nice to go to a café with them and have the time to give them the focused attention and fun that they need too.

Before the pandemic we enjoyed meeting other Julia’s House families at the Devizes hospice and attending the open days there.

It’s nice to speak to other parents of children with a life limiting condition – it feels so relaxed when you’re all there together and you don’t feel like you’re being judged by anyone. It’s like you don’t want that day to end.

Julia’s House makes everything that we’re going through feel normal, and I think our normality would disappear if Julia’s House disappeared.

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