Arthur, age 7, was born with Worster-Drought Syndrome (WDS), a form of cerebral palsy that affects the muscles around his mouth and throat. This causes problems for him with swallowing and feeding, and he has full vocal paralysis, meaning he is unable to speak. His WDS also causes additional complex side-effects, with Arthur experiencing multiple seizures a day. The most common of these include drop seizures, meaning that those around him have to be extra-vigilant as he can fall to the ground at any moment.

Jessie May nurse Andy has been supporting the family for the past year*. Even though Arthur is non-verbal, and has some developmental delay he understands everything you say to him and is very much a lively seven year old. He gets excited when Andy visits, his face lights up, he beams a huge cheesy grin, and he starts to do a little ‘wiggle-dance’. Despite his limitations, he’s not one for sitting still.  Melanie, Arthur’s mum says

Andy’s visits are fun for Arthur and he has a good understanding of what’s going on and what we’re going through. When visiting us at home, we never have to worry about the house being in shambles or the difficult times. Andy just comes in and takes it all in his stride. His presence is reassuring. He’s calming and takes the pressure off us.

Arthur in a hospital bed

To improve his condition, Arthur was offered a palliative procedure to significantly improve his quality of life by the team at Bristol Children’s Hospital (BRHC): a Corpus-callosotomy. A procedure where the surgeon divides the brain in half down the main fibre bundle that connects the left and right sides to each other. This then stops the two halves “talking” to each other in order to stop any abnormal electrical activity flow; the reason behind Arthur’s seizures. Arthur was on the list for a long time, and in October 2021 that moment finally came and he was able to have his surgery.

In the weeks after his operation, Melanie would sit vigil by his bedside for hours on end, while dad, Marcelo, looked after two of Arthur’s sisters at home.

This is where Jessie May nurse, Andy, was able to step in. He would visit Arthur on a weekly basis, to provide him with a friendly face and offer his support to Melanie. During Andy’s visits, Melanie was able to take a break for herself after being with him 24/7. This might be to simply go and get herself a cup of coffee and take a walk, or even to head home for a much-needed shower or a couple of hours rest. It also gave Arthur some one-on-one time with another face that he trusted and was comfortable with, vital for his ongoing development. Melanie says;

I don’t know how to tell you how important Andy’s support in hospital is. It’s invaluable because no one else can offer the support he can.

Because of Covid we can’t have friends and family in hospital, so having him visit is invaluable. But even if friends and family could come in, when things are really hard and stressful you want to protect them, so you don’t share a lot of stuff.

But with Andy I can have a frank and honest conversation and he can support me. His expertise means he just gets it. Andy has a complete overview of Arthur and his health in the same way I and his dad do, he holds the whole picture.

And we can even have a laugh, Andy’s personality really fits our family. We need a laugh amongst all the stress and seriousness. Even when Arthur was in intensive care, Andy brought him fun. Arthur was stressed and unhappy but lit up when Andy arrived.

Arthur lost trust in the doctors and nurses because of all the procedures he had to have, but he retained that relationship and trust with Andy. That makes a huge difference.

The rehabilitation after a surgery of this kind can take months. Arthur was in hospital for three months and is now home with his family, though still has to go back twice a week.

Andy will continue to be there for Arthur and his family through the rest of Arthur’s recovery and into the future.

Thank you for giving money. It’s such a massive thing for us as families. Jessie May know how to help us, they are highly trained with years of experience which is so valuable to families. So the best support you can give is to make sure we have Jessie May.

*since April 2021