Josselin’s Story | Julia's House

A daily battle – by mum, Karen

Josselin doesn’t understand that she needs to close her eyes and go to sleep. She can be awake constantly for three days and three nights and just keep going. And when she’s awake, I’m awake too. It’s exhausting.

Joss was six months old when she was diagnosed with CHARGE syndrome. By then I was just relieved to have the diagnosis. All children are affected differently with her condition, but for Joss it’s very severe. The doctors would say, ‘we’ve never seen a child like Josselin before’. She’s profoundly deaf and registered blind. She has trouble swallowing so she’s tube fed. And she doesn’t walk or talk, or have any formal kind of communication like sign language.

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Josselin also has heart and breathing problems. She’s had more than 35 operations for various things – I’ve lost count now there’s been so many. She wears a ventilator at night and her heart rate has to be monitored because it can drop dangerously low. When that happens her alarm goes off and I have to wake her up a little to bring it back up. Some nights it’s not so bad, but other nights it feels like it’s constantly going off. At the moment, I haven’t slept in my bed for six weeks because I’m either up with Joss, or kipping on the sofa in her room so I’m there if she needs me.

When she was younger, we used to have a hospital bag by the front door because we were back and forth so often. We’d be having a normal evening and then all of a sudden you’d be rushing into hospital. It was very unpredictable back then.

Even though Joss still has a lot of health problems, it’s her behaviour that is one of the most challenging things now. She has to be supervised constantly. She can bum shuffle around and break things. She’s fixated with water and any kind of liquid, so she’ll flood things if you let her. She can self-harm and she can hit and scratch too. I’ve got scars up my arms from where she’s lashed out. It means people don’t want to look after her and it is like a full time job because she’s such a handful.

Dad’s coma at Christmas time

My husband Lee used to help out with the nights and he was always Josselin’s ‘picker-upper’, but he can’t do that now. During the pandemic, between Christmas and New Year’s Eve 2020, he developed COVID. We’d all had it but Lee got really poorly with it. He started to have kidney pain and he was rushed into hospital in an ambulance. Little did we know then that we wouldn’t see him again for months. He was put on life support and he went into a coma for four weeks. During that time, he suffered a stroke and when he woke up he had lost his ability to walk, talk, eat and drink. It was horrendous.

Because of Joss, we knew what a tracheostomy looked like, but nothing could have prepared us for seeing Lee with one. He’d lost four or five stone in weight too, so it was really shocking for everyone. We weren’t allowed to visit so we would speak to him over video calls. Our sons Dalton (10) and Alex (18) would write things down that they wanted to talk to their dad about because he could only nod back. For Joss it was really difficult. She didn’t understand where her dad had gone and she couldn’t see him on the screen or communicate with him that way. Lee had always been the one that Joss reached out for when she wanted a carry, so when he came home she found it very frustrating that he couldn’t do that anymore.

Since coming home, Lee has learned to walk and talk and eat again, but he has been left with disabilities and he is very weak. His lungs are bad so he gets ill very easily too with things like pneumonia. The year before all of this Lee also had testicular cancer. He had surgery and fortunately it’s stable now, but it means on top of everything else, he needs testosterone injections which make him very tired. He can just fall into a deep sleep without knowing and it makes looking after Joss impossible.

Lee used to be a builder and was always very healthy before this, so it’s a huge change and we don’t know if he’ll ever be the same again.

Julia’s House is our lifeline

You spend so much of your time fighting when you have a child like Joss – for the equipment and funding you desperately need. There’s a lot of form filling and difficult conversations. So it’s a relief to have the support of Julia’s House and have someone positive to speak to about everything. It’s nice to know the nurses and carers are there for us and they’re on our side.

There aren’t many people who want to look after Josselin. The only break I ever get is when she is cared for by Julia’s House. We have community sits when the nurses and carers come to our home, but Josselin mainly loves to go into the hospice building now she’s older. Most 16-year-olds would be going off with their friends so it’s nice for her to have somewhere different of her own that she can go to.

Although she can’t hear and she can only see light, Joss has been to the hospice building so many times, she’ll scoot her way around and she recognises the bedrooms and bathroom and sensory room when she gets there. She knows the Julia’s House nurses and carers through touch – she feels their badges and their polo shirts. She’ll recognise the ones she sees regularly too. She’s a lot calmer and happier when she goes into the hospice and she’s less challenging in her behaviour – she’ll have a good day… unless they try to do her hair!

There are a lot of things there to entertain her which we wouldn’t be able to have at home, like the magic carpet and sensory room, and the big specialist bath.

The time she spends with her nurses and carers is so helpful for me too; it’s amazing what you can do with four or five hours when you don’t normally have a break!

When Joss is being looked after by Julia’s House, that’s the only time we get to do things with our 10-year-old son Dalton on his own. Dalton doesn’t like going out with Josselin because it can be quite stressful. He can’t stop to look at the things he wants to look at. She’ll get angry if we’re stood still and take up a lot of the attention. Even if it’s something simple like getting some lunch and going for a walk somewhere, he really enjoys spending that time with just me and Lee.

Dalton also sees his Julia’s House sibling support worker Tracey – she’s one of his favourite people. He doesn’t go to school because he suffers really badly with anxiety so he’s home schooled at the moment. Tracey will usually visit Dalton on a week day and they’ll go off to the park, or for lunch or build some Lego together. He really likes her and if he hasn’t seen Tracey for a while, he’ll start asking when she’s next coming to see him. It’s helpful for him to have someone else he can trust to talk to about things.

Finding the light in the shade

When Joss was young, I’d spend a lot of time on the internet just trying to work out what caused her condition, what other children with CHARGE syndrome were like, and what to expect in the months and years ahead. I was obsessed with it really.

Now, I don’t care why Joss has her condition or what the future holds. I’m not interested in people telling me how long she’s going to live for, or if she’ll ever walk. I feel lucky to have Joss because she’s changed our lives for the positive.

I know Joss has got a lot of things wrong with her but that doesn’t describe her. She’s hilarious, she makes us laugh every day and she’s done so many more things than other children her age.

She’s been to Dallas, Orlando and Russia – I’ve got a picture on my wall of all the places around the world she’s been to. She’s swam with dolphins, she’s been surfing and she’s done zip lining. She is loved and she’s had a happy life, so I’d rather focus on the fun things for her to do than worry about what could happen next.

I’d never even known anyone with a disabled child before Joss and it was a complete shock in the first couple of years when we found out more about her condition. But someone once said to me that every time you’re given a diagnosis, you’re just learning more about your child, and that has really helped me get through it. It wasn’t that Joss had suddenly become deaf on the day she was diagnosed – it’s that we’d learnt more about who she already was.

Joss has made me more accepting and inclusive. I’ve done the best things and met the best people with her. While I might change some of the things that have happened, I wouldn’t change who Joss is at all.

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