Valerie Kiln-Barfoot



My name is Valerie Kiln-Barfoot and I’m a 24 year old who was diagnosed with Jeunes Syndrome at birth.
I am lucky enough to have only a relatively mild form of Jeunes which has only caused skeletal abnormalities which means I use a wheelchair.

I live down in West Sussex and work as a post graduate researcher in dementia care. I have loads of hobbies including playing the guitar, horse riding and being a trustee for a local disability charity and the Jeunes Syndrome representative at the Ciliopathy Alliance.

If I could give one piece of advice or reassurance to other families living with Jeunes it would be that things will get better. Not all days are going to be all sunshine and like but I lead as ‘normal’ a life as any. I still work, I still live independently, drive a car, went to university. It may be a different life to others but I wouldn’t say its any less worthy a life or any less enjoyable.