Yesterday I went to the funeral of my second cousin. She was 100 years old, plus 3 days. It's pretty rare these days to make a century, let alone to die quietly of old age. Although statistics tell us that we are living longer, we seem to be dying less of old age and more of debilitating and terminal illnesses. Our Western lifestyles are quite different from the days when my cousin, Mary, was young. By comparison, we are pampered, live cushy lifestyles, expect and demand more, some earn ridiculous amounts of money and become immensely rich, some lose everything in life's lottery and are condemned to live in poverty.
And some of us have children with Prader-Willi Syndrome.
One hundred years ago, there was no such thing as "Prader-Willi Syndrome". It may have existed, but had yet to be described and doctors Prader, Willi, and Labhart had yet to make their entrance on the world's scientific stage. Autism was only described as a particular condition in 1943, and 28 years after Mary was born, penicillin was discovered. Transport was usually by horse and carriage, certainly for Mary, radio and hand-written letters were the means of communication. Nothing was as instant as it can be today. Every household chore was labour-intensive, food was plain and wholesome, visitors didn't just drop in, they stayed sometimes for weeks.
Child mortality in Mary's day was common. The vast majority of children born with what we now call "PWS" would have died, just faded away through lack of nutrition. Any who did survive would later die from obesity related illnesses. We are lucky today that our knowledge over the last 100 years has become very informed and through medical science and research we understand complicated disorders such as PWS. Even if it takes us another 100 years, our work is to continue to push the boundaries, to advocate for our children and adults with PWS, to break the barriers... together. We must keep sharing our knowledge, working together, parents, caregivers, teachers, and the medical profession; for scientists and researchers to share their learning so that we can all work from the same page.
One of the best ways of doing this is through our PWS conferences, and by sharing what we have learned both in theory and practice. Sweden, Denmark and Norway PW Associations are about to celebrate their 25th anniversary, IPWSO will celebrate its 8th international conference in 2013; and the world will celebrate the Emerald Anniversary of 55 years since the naming of Prader-Willi Syndrome. Fifty-five years ago, Mary was 45 years old. She had raised 5 children and was matriach on a large sheep station. She'd lived through two world wars, known hardship, sadness, and great happiness.
We each have our stories to tell, and although Mary was unaware she would live for a full century, what an amazing time she has lived through! And how lucky we all are that during her lifetime, doctors Prader, Willi, and Labhard also lived.