It was my birthday last month and I received a priceless gift: All the videos from Knox’s life on DVDs! No gift could equal this. In this stage of grief, watching the happy times we had with Knox is a great comfort. I love watching each and every video, […]
Tag: severe cockayne syndrome
Amy and Friends CS Retreat 2013
We traveled over to North Wales last week to attend our second Amy and Friends Annual Cockayne Syndrome Family Conference. My son, Knox, has a severe form of Cockayne Syndrome. It’s a terminal condition that is causing him to age faster than normal. Instead of growing, gaining weight, and reaching […]