Sammy

My son has Prader Willi Syndrome (PWS). Like Down’s Syndrome, it is a chromosomal condition. Whereas people with Down’s have one more chromosome than most people, (47 instead of 46), people with PWS have half of one too few.

Half a chromosome missing at the moment of conception. A difference of 1.09% from everyone else. It doesn't seem much, but it's enough to change lives, and it happens to about one in 15,000 babies.

Because he has PWS, my son's life was pretty much mapped out from the moment of his birth. For instance, we knew from day one food would be an issue. PWS people have insatiable appetites and are constantly starving. It's the cruellest addiction: whereas an alcoholic can abstain from drink, and a drug addict can avoid their particular demons, a PWS person needs food to survive.

Just not as much as their body tells them they do.

Left to themselves, PWS people could eat themselves to death. When my son was younger, we had padlocks on the food cupboards and a burglar alarm on the kitchen door. One incredulous visitor asked if we were worried about hungry burglars. Thanks to this aspect of the condition, and others – (he has learning difficulties, some physical disabilities, and emotional problems) – he will always need a carer. I am glad to say he is surrounded by wonderful people, and he has the best life, full of love and fun and laughter.

Something that is often overlooked, though, is that when a child is born with a condition like PWS, they are not the only ones affected. Parents, siblings, grandparents, friends and neighbours will have their lives changed, too. Everything is different, and it's never going to go back.

These changes, and the effect they have, are at the heart of the play, “Sammy.”

Sammy is born with PWS and his parents’ lives are turned on their heads. They cope in different ways: while his mother, Jenny, throws herself into preparing for the future, locking the fridge before her baby can even roll over in his crib and devoting herself to her son and his needs, his father, Mark, retreats into denial, convinced doctors are wrong and his son is like everyone else. He needs his wife but she pushes him away to concentrate on Sammy. She needs Mark’s support, but he pulls back, reaching for the life he once had.

Then there are the neighbours, Christine and Phil, who can't have children of their own. Sammy is destined to be almost as important to them as he is to his parents.

Sammy never appears on stage. Apart from one instance when baby Sammy cries, we never hear him. But he is a central character, informing every line in every scene, and affecting the four people in the play profoundly.

The play spans the first 18 years of Sammy's life. It won the Sussex Playwrights’ National Open award.

There are four characters on stage, and all the action takes place in one set.

It is published by Lazy Bee Scripts, and you can find out more here.