Twenty-three-year-old Simon Wakelin has a specially converted off road wheelchair to mow lawns at Skanda Vale Monastery in Carmarthenshire. He was born with Duchenne Muscular Dystrophy – a rare genetic disorder that makes his muscles waste away over time – and has been a patient at the National Lottery funded monastery’s hospice for two years. Mowing the lawns is one of the ways Simon’s eases feelings of boredom and isolation:
I always enjoyed keeping the lawn in shape and being outdoors. When I lost the use of my legs as my muscles weakened, I found myself unable to do many of the things I had done before. But if something gets in my way I just find a way around it. It’s hard sometimes but I find a way somehow.
Boys with Duchenne are generally expected to live into their late teens or early twenties, so my symptoms are now quite advanced but my positive attitude enables me to make the most of whatever life throws at me.
One of the biggest problems I face is boredom and isolation. Inside I’m a normal 23-year-old man, with a healthy appetite for cars, diggers and all the usual. Mowing the lawn enables me to meet new people, get out, and feel like a valued part of the team.
Simon’s parents, Roy and Maxine Wakelin, are his full time carers. Roy explains the value of simple activities that most of us take for granted
When he’s socialising, he’s taking his mind is off the pain. But if he’s sat at home feeling bored then it overwhelms him. Keeping occupied is so important.
We were quite wary of hospices at first, having had some negative experiences in the past. But after spending time with the monks and nuns at Skanda Vale, we came to hear about their hospice project, and wanted to find out more.
I was overwhelmed with how different it was – friendly and welcoming, not like a hospice at all with everyone laughing, joking and having fun. For the time that I’m here, I feel like I’m surrounded by family.
Simon really benefits from the therapies. The Reiki and foot massages help him relax and get rid of some of the tension. He’s got no way he can easily vent his anger. But he comes back home feeling much better, much calmer. He says it helps with the pain too.
There is currently a huge gap in services for patients of Simon’s age. With recent advances in medical care, children with diseases like Duchenne now can be expected to live much longer. But being a teenager or young adult with a terminal illness can feel like stepping into a void.
But we knew from day one, after we met the brothers, that if Simon was ever with them for any period of time that they would look after him. He did actually contemplate being a monk. He really did. There was a couple of things that put him off though like not having a 50 inch TV, and not having any girls.
Skanda Vale’s new inpatient hospice unit has been designed to help young people like Simon, alongside our older patients. And with a £500,000 grant from the National Lottery Community Fund it is expanding services with the development of a six-bed in-care patient facility. Check out progress of the project here.