Josh's story | Julia's House

Teenager Josh loves acting and drama - and spending time with friends. But life can be tough when you have a life-threatening condition that separates you from your peers…

Josh loves music and theatre and acting –putting on a show – he is so full of life and yet has to take life easy, go steady, which is really hard on him.

It is a miracle that Josh is here at all. A scan while I was pregnant revealed that he had a hole in his heart and I was offered a termination. He was not expected to survive birth, let along reach his teenage years.

Josh has what’s known as hand and heart syndrome. He was born with the tubes to his heart and lungs the wrong way round so no oxygen was going to his right lung. He also had a bone missing in his left arm and a club hand.

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He’s had open heart surgery three times and numerous smaller operations on his heart since – he will continually need those as he grows. He also had to have a rod inserted into his arm to strengthen it and surgery on his hand to create a thumb so that he has a working forefinger and thumb which can grip and pick things up.

Because of his heart problems his oxygen levels can drop really suddenly – he can go blue in seconds and need to rest or have oxygen and if his levels get too low he can fall unconscious.

Josh can go down downhill very quickly. Just everyday things like walking can tire him and he has a wheelchair if he needs to go out and about over any distance. Everything is a lot harder in cold weather as his breathing and heart are affected - winter can be a particularly tough time for him.

Josh‘s father died when he only a year old, so it was just me and him since then. We have a really good relationship which isn’t hard because he is such a great lad.

Julia’s House was an absolute lifeline. I felt so isolated coping on my own – especially at night. It’s hard enough when your child is well, when they are ill, it is overwhelming. Just having someone else around who understood what I was going through made all the difference.

We’ve been supported by Julia’s House for more than seven years now, since Josh had his first bad seizure and ended up in hospital. To start with it was respite for me, to give me a break from looking after a young child on my own. I would use the time to have a sleep, a proper rest and I could only do that because I knew Josh was in safe hands with the nurses and carers so I could completely relax.

These days it is more about respite for him. Josh has made some really good friends with other children he’s met at hospice sessions and has formed strong bonds with his carers. They are amazingly supportive. They know how much acting means to him and go along to all his school performances to cheer him on – it means so much to him to look out into the audience and see their faces. He has a real fan club among Julia’s House staff!

Josh has never been invited for a sleepover with any of his school friends - their parents worry too much about how they would cope if anything happened. Instead, Josh has had all his sleepovers at the hospice with his Julia’s House buddies.

It’s hard when you have a condition that restricts how much you can do – especially at an age when your hormones are kicking in and you want to do so much. He does feel he is missing out, that all his friends are getting on and life is passing him by.

Like any other teenagers he wants to be able to meet his mates and go into town, do ordinary things without physical limitations. He can get down about it, but for all that he is a remarkably strong character and that gets him through.

You have got to have a lot of confidence to go to school every day and be different to other children. Secondary School is not a kind environment for children who stand out.

Josh has become very good at blending in and getting on with things but it must be hard. He is really good at acting and an amazingly good cartoonist and this has helped him through.

He loves drama at school and is very energetic, talking part in all the shows. It really frustrates him that he can’t do sport, at least not easily. He can have a go but he has to sit out every now and again and give himself a chance to recover.

He would love to act or direct when he’s older – it’s a real ambition for him and given him something positive to work towards and focus on. The carers are so good at nurturing and encouraging this talent.

Looking back, when someone first mentioned the H-word – hospice – I was terrified. It’s such a scary word and yet, when you get to know the care that behind the label you realise there’s nothing to fear – it’s a place full of life.

On my first visit to the hospice I was really nervous. I thought it would be all clinical like a hospital, but it isn’t at all, it’s just like a happy home, a place of kindness and friendship. The care team were lovely, so welcoming. When Josh came out, he just turned to me and said: “I approve of them!”

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