A life lived, a journey taken, an ending no one could believe.
Ken had Down Syndrome, and as he aged he developed Alzheimer's. He was only 48. The genetics that caused his Downs also predisposed him to this disease.
He lived a life full of love, compassion, accomplishments, challenges and victories. Like most people with Downs, he brought more love into this world than many of us will ever achieve. Within the pages of this book are some of the wonderful stories of his life. Each one a glimpse into who he was, each one ending with how Alzheimer's took that away.
So many people who met Ken after Alzheimer's had taken hold, assumed he must have been like that his whole life. For me this was a heartbreaking eye-opener, prompting me to tell the world just how amazing my big brother was.
It also became clear that there were gaps between what Ken needed for care, and what was available. My hope is that his story will inspire the changes we need in our healthcare systems and other organizations to provide the level of care, empathy, love and understanding required for those aging with Down Syndrome.
People with Downs are valuable members of our society who
contribute in incredible ways. Not all will develop Alzheimer's, but Down Syndrome adults with Alzheimer's will become more common as they too are living longer. We need to understand what that looks like and how to help them. All proceeds from this book
go to a foundation created for this cause.
A story about a brother that was down syndrome. If you are looking for a story of a particular family member, this is for you. If you are wanting a better understanding of the down syndrome and various habits, actions, commonalities, this isn't the book. Had hoped to find some semblance to my own story, or others I know, but nothing rang a bell at all. It was written so even hard to transfer experiences. Nice memorial to her brother however. Just wasn't what I expected.