An Angel’s Life
When Rufus was diagnosed with Angelman Syndrome, a genetic disorder with severe developmental delay and learning difficulties, his parents felt they had been handed a life sentence. The medical discussion was shrouded in negativity, with doctors informing them of all the things Rufus wouldn’t be able to do, but nobody telling them about how life would change for the better. With this close, intimate study of Rufus and his family, I wanted to remove some of the stigma and fear of disability, and show a fuller picture of both the joys and challenges of special needs family life.
The medical profession can scare parents in the way it talks about disability, focussing on the difficulties and ignoring an individual child’s personality and all the positive ways in which they will enrich lives. Rufus’ family have seen their capacity for love and joy growing exponentially. Lucy explains, ‘Never in a million years would I have imagined this story when I was pregnant with Rufus. The story I had imagined was a pretty dull one. The pages of this story might be a bit damp with tears but they will be full of little victories: milestones met at unexpected times, cuddles and sloppy kisses from the most loving boy in the world, an unbreakable bond with his protective sister and blessings beyond our wildest dreams.’