meet rufus
Rufus was born with Angelman Syndrome (AS) but he wasn't officially diagnosed until he was 13 months old. Angelman Syndrome is a rare neurological disorder affecting around 1:20,000 births. In short, it results in significantly delayed development, severe learning difficulties, little or no speech, sleep difficulties, seizures and mobility issues. It doesn't affect life expectancy but people with AS will need support in all aspects of daily life throughout their lives. Without getting too scientific, AS is caused by a deletion or mutation of the UBE3A gene within the 15th chromosome.
AS is named after Dr Harry Angelman who noticed that several of the patients on his paediatric ward in Warrington had similar issues to one another. The painting 'Portrait Of A Child With A Drawing' by Giovanni Francesco Caroto, which he had seen in a museum, reminded him of those three children under his care who had these unusual similarities and he wrote a medical paper which was published in 1965 about the so-called Puppet Children. The happy child in the painting and the stiff, jerky, flappy movements of the children he had worked with were, in his words, similar to those of a puppet. The syndrome was later known as Happy Puppet Syndrome but, thankfully, was eventually renamed Angelman Syndrome.
So there's the science and history for you. It's good to know the facts but nothing comes close to actually getting to know the boy himself.
For more information and resources, go to: www.angelmanuk.org
Harry Angelman next to Giovanni Francesco Caroto’s ‘Portrait of a Child With a Drawing’
I’m not saying we’re worthless. Far from it. But we certainly don’t all have a Masters in special needs parenting, magical powers to make our children sleep and unbreakable backs to carry them up and down the stairs until they are adults. We are just ordinary people trying to go about our lives just like anyone else who is doing the best with what they’ve been given. Plenty of people have done it before us, we’re doing it right now and you WILL be able to do it too. So join me as I untangle my thoughts on special need parenting and hopefully show you how to do this life with a smile on your face too.