I have two adult sons who are both KS. They are amazing, and I am very, very proud of who they are as individuals, and of the things they have both achieved. The boys are very different, although they look similar, and our KS journey has sometimes been challenging, but mainly very positive.

I worked in public service for 35 years and have recently retired, and now enjoy several different voluntary roles. I became involved with the KSA about 2 years ago and have been hugely inspired by the help which Alison (Vice-Chair) and others have given. Getting involved and meeting other people and families affected by KS has been life changing for us – the support has been so uplifting!

When we are not working or volunteering, my husband and I enjoy walking, cycling, going to music events and caravanning – but don’t hold that against us!