Providing help and advice, even in lockdown

William was five months old when he was diagnosed with myotubular myopathy - a condition that causes general muscle weakness and difficulties swallowing and breathing. 

His family were told it would be unlikely he would reach his first birthday but in January (2021) William turned 10, something his mum, Adele, describes as “a huge achievement” as statistics say the likelihood of that happening was just one per cent.  

William was two years old when he first came for respite with his family to CHSW’s Charlton Farm near Bristol. His mum, Adele, explains how, eight years on, CHSW continues to care for her family…

“Unless you’re introduced to this world, most people don’t know it exists. Most people don’t understand what a children’s hospice is or how it helps families.

We moved to Lympstone in Devon from Wales when William was one. A year later we had our first visit to Charlton Farm. At the time, we were given the choice of using Little Bridge House in Barnstaple, but as our family and many of our friends were in Wales, we decided to come to Charlton Farm. We had to really think about which hospice would be best for us – they both take about 90 minutes to reach from our home but I thought that our nearest PICU is in Bristol and if William got really poorly it would be easier to be at Charlton Farm and our family could be with him quickly. 

Throughout lockdown we’ve had regular phone calls from the care team at Charlton Farm and we’ve had some home visits. They are always there in the background providing support and advice.

I’m glad we made that decision because we’ve had friends and family come and visit us whilst we’ve been at Charlton Farm for respite, which is really lovely. If that time ever comes when we’re here for end of life, I want our family and friends to feel comfortable here – for it to be a familiar place. If that time comes and people want to say goodbye, they will know what it’s like here. I don’t like to think about these things, but I feel like I have to.

William has made lots of friends at Charlton Farm now and he loves it! His brother James is five and happily goes off with the sibling team and has a great time. James was unhappy not to be able to come for our resilience stay during lockdown – but I tried to explain that because of covid things weren’t quite the same at the hospice – he wouldn’t be able to use the ball pit and the soft play. Fortunately, Ian from the care team visited him at home with some dinosaur figurines which he painted whilst we were having a stay and that made him happy.

William is cognitively very able – he’s a normal 10-year-old boy, with a great sense of humour, in what we call a ‘broken body’. He’s really into his music and likes a real mix of things: sea shanties, Elton John, Bill Withers, Frank Sinatra.

When he’s at Charlton Farm he loves playing in the basketball area. He doesn’t have the strength to throw the ball himself, but we help him and really enjoys it. If you were to ask William what he likes to do at the hospice, he’ll say he likes being at the big dining room table; he loves to people watch.

We’ve never left William on his own at Charlton Farm – I like us to stay there together. My husband is in the military so it’s usually me and my mum and William’s brother James, who stay. My daughter Rhianon used to come but she’s 21 now so hasn’t been for a long time but she plans to stay again when the Covid restrictions have lifted. 

Our home life is very busy. We love living in Devon. In the village we live, William is like a little celebrity! My husband often rides the boys around on his bike with our German Sheppard alongside and people recognise him! 

We get a bit envious of other people sometimes as most people can get up and go for a walk before lunch. For us it’s a bit of a mission. It will take a couple of hours to get William ready for the day and if he’s in his chair and we decide to go out for a walk, we’ll need to hoist him back into the bed to change his pad, set up his wheelchair with his ventilator and suction machine, make sure we have all his emergency kit and finally make sure he’s comfortable. Even if we want to go out for a short time it’s like getting ready for a day trip.

William has a variety of different physio routines at the moment because he has scoliosis which has deteriorated a lot in the last year. He now has to lay down for an hour every three hours – and a 10-year-old doesn’t want to do that! This also means we’ll have to think really carefully about how we give William this rest once restrictions have lifted and attractions are open again. We will need to think about where we can lay him down – a lot of places won’t be equipped to deal with his needs. If we want to take the boys away we need to think about the travel time, we need to think about where we will stop for him to rest. The bigger William gets, the more difficult it is to find somewhere for him to lay down for an hour.

That’s always been one of our biggest battles with William; because he’s so cognitively able, it just his body that is broken so when he needs that rest time, we need to entertain him and try and get him to have some time-out. If he gets a cold, he becomes very weak to the point where he may not be able to hold his head up; it really knocks him for six and he has to lay down, but he won’t want to.

His scoliosis causes him pain and discomfort and he’s on pain medication three times a day. Every week he seems to experience pain in a new place so we think he may need surgery in the near future. He knows he’s got a ‘wonky donkey’ spine, as we call it, but he doesn’t understand the extent of the problem.

Over the years William has lost the ability to do certain things – he used to be able to anti-gravity lift his arms and legs in the bed whilst laying down – he can’t do that now, but he lost that ability when he was younger. Now when he loses the ability to do something, he’ll ask ‘when will I be able to do that again’ which is so hard. We have a psychologist who helps us explain his condition to him. He asks why he has to have his button (a gastrostomy) and we are honest with him and say ‘your condition stops you from being able to swallow so this is how we need to feed you’. He is very switched on so we have to be honest with him, but we wait until he asks us about something before we start explaining everything to him.

Throughout lockdown we’ve had regular phone calls from the care team at Charlton Farm and we’ve had some home visits. They know we’ve found it hard making decisions about William’s scoliosis and have had some conversations with us about that. They are always there in the background providing support and advice. I know I can phone anytime too. I know they speak to families like mine all the time and there’s no shocking them. If I’m feeling down because of a hospital appointment they get it. Other people see me going to hospital appointments all the time William so they wouldn’t know that sometimes they are distressing – talking about William’s potential spinal surgery is a really big thing and the care team get it, they get why I’m worried because they know what the surgery involves, and that William may not make it through.

Charlton Farm are there for all of us. They make sure when we are there we rest and relax. My husband, Keiron, summed it up when he said: ‘we can step away from being a nurse or carer when we are at the hospice and just be his dad and his mum’. They have given us memories that will last a lifetime and that is very precious."