Johnathon's Story

Johnathon was born with CHARGE Syndrome, a rare genetic disorder that affects multiple organs including sight, hearing and heart.

When we realised something was wrong with Johnathon we went into shock. It was like a nightmare in slow-motion. I felt totally numb, just couldn’t react.  Leanne was like a Rottweiler - she was very angry but she channelled that anger into being proactive about getting the best care for Johnathon, into fighting for her child.

We did not speak to each other about how we felt, we never have. You have to get on with each day as it comes and take the positives. If you sit and dwell on it you face spiralling into depression. I don’t mind admitting I felt very depressed in those early years.

It wasn’t just the impact on me and Leanne, it was how it affected the girls, Johnathan’s sisters. We had two children at that point and I was driving 400 miles a day while Johnathon was in hospital, just to keep things normal for them, to be able to take them to and from school and me to and from our home in Tidworth to hospital in Southampton.

I was on autopilot, getting virtually no sleep. I was in the Army and ended up having to take seven months off because we were going through so much. The Army were good about giving me time off to cope but Leanne and I didn’t know enough people on the base where we were living to feel we could ask anyone for help with the girls while we looked after Johnathon. We really struggled on our own.  

Julia’s House had been mentioned and was in the back of our minds but the ‘hospice’ word put us off.  It’s a word that terrifies most people. We hadn’t realised how much they could help and what a positive experience it would be. Then we met Claire, who was to be Johnathon’s Julia’s House nurse and she put us completely at ease. 

We never knew how much fun it would be for Johnathan. He gets up to all sorts with Claire - they even go down the slide in the garden together! 

We first knew something was wrong when Leanne went for her 20 week scan. It showed that Johnathon’s stomach wasn’t filling because his oesophagus wasn’t connected properly. When he was born he was whisked off for corrective surgery but at 2am the cardiologist was called as they had found other problems. He had a hole in his heart and a leaky valve.

We were told the devastating news that they thought he had a syndrome - Charge Syndrome - and they told us not to Google it because they didn’t want us to be scared, but of course you do.

The doctors explained that he would be deaf and blind and would never sit up. He had neurological tests and we were told he was brain dead. Leanne shouted at the consultant and told him to get out. We could see that he could react to some things so Leanne wasn’t having any of it. 

The medical team were only seeing Jonathon now and again, we were seeing him every day and knew he was capable of so much more than they had predicted. Turns out he has vision in his right eye and although the wiring between his brain and ear is not right, if he really concentrates and you have his attention he can hear in his right ear too.

If you whistle at him he can hear that and will turn towards you - then you have his attention and he can understand what you are saying. He is really good at lip reading and taught himself sign language just by watching Mr Tumble on the telly - we all did! 

He’s at mainstream school and all his classmates have learnt to sign so they can communicate and support him. 

He is such character, a real outdoorsy boy with a great sense of fun. He plays little tricks, like writing extra things onto the shopping list - even though he can’t eat any of them! Another trick of his is to put balloons under car tyres and wait for people to drive off - he is in fits of laughter waiting.

Julia’s House has really helped Johnathan become more independent - but also helped us be more independent of him too. Thanks to Claire and the rest of his care team he has learnt to trust other people and be less reliant, less of a mummy’s boy.  

Claire has helped encourage me to relax about leaving him by taking over the care and showing that everyone can have a break and Jonathon will still be safe and have a lovely time.

We’ve all benefitted: Simon and I had no ‘couple time’ in years but have been into town, just the two of us and Amy and Sophie have been to sibling events like cinema trips, the annual ball and even residential camps.

I have also had my very first time going out on my own without Simon or the children - to a Julia’s House mums’ lunch at Sting and Trudie’s house. I had never done anything or been anywhere like that before. I had a gorgeous lunch, sat under the trees talking to other mums and then had a swim in the pool. It felt amazing to be able to forget about absolutely everything for those few hours - to completely and utterly relax.

I know you have to go back to reality - it is always waiting for you - but to be able to make that reality disappear, even for a short time, makes the world of difference.

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Leanne trusts no-one with Jonathon - except Julia’s House. We have 100 per cent trust in Claire and Jonathon loves her - they have a really special bond.

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