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About us

       

Hello and thank you so much for visiting this site. My name's Annabel and 11 years ago my second son Freddie was born with Downs Syndrome. Freddie has two brothers, one older and another younger, a wonderful father, two dogs and two cats. We live in the UK near Bristol.

This story starts in 1998, the year when we were abruptly thrown off the comfortable well worn path of life; the day a doctor gently told us that our desperately ill newborn son probably had Downs Syndrome. Now that I’ve been off it, I fully appreciate the ease of following a well worn path, and equally, the difficulty of navigating an unfamiliar one.

Life for people with Downs Syndrome has changed radically in the last four decades, but the extent of the change is poorly understood. Life expectancy has increased from only 12 years to 60.  Attendance in mainstream schools has gone from close to zero to 80%.  People with Downs Syndrome are suddenly visible in society. When Freddie was born, I was woefully ignorant.

Never the less, having a child with Downs Syndrome throws you into completely uncharted territory.  Official systems intended to help border on the surreal; Lewis Carroll and Douglas Adams would have been hard pressed to make up some of the experiences we have had dealing with our Local Authority and the National Health Service. In addition to having Downs Syndrome Freddie had very poor health as a young child. Over the years he’s had 11 operations and spent a lot of time in hospital. This site is set against the background of an otherwise ordinary family living in the UK at the beginning of the 21st century. What happened to us could happen to anyone.

To read more about us, do visit Freddie's old blog on the Mencap website where you can read about his early years.

For more recent updates, you can follow the daily blog at blog.thiswayup.org.

I hope you enjoy the site and welcome any feedback which you can send to annabel@tall.org.uk