Lucy single-handedly manages getting Rufus’ coat on at the end of nursery, whilst carrying four-month-old baby Nell in a baby carrier. Life for the family of five is never easy or simple; Rufus’ disability comes with everyday additional challenges: he can’t talk or walk, he is a dead weight when lifted, he has no concept of danger, and doesn’t put his hands out if he falls. He requires near constant attention to keep him safe.

The PODD (Pragmatic Organization Dynamic Display) book is a resource for improving communication and literacy abilities. It contains a number of pages on different topics. Rufus’ parents keep the relevant sheets in the kitchen, his bedroom and the bathroom to explain various activities and to talk about who they’re going to see that day.

Rufus enjoys making fun happen by prompting his sister, Betsy, to pump air on his face from a balloon pump. This was a new development for Rufus who, previously, had never initiated a game. It marked an important stage of discovering his power to take control of his own world.

Rufus is very dramatic in his affections and likes to pull people close for a really good hug so Lucy carefully guards and guides his cuddles with his baby sister, Nell.

Betsy loves being a big sister to Rufus, and helps pushing his wheelchair on the walk home from school. Lucy says, ‘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.

A very common moment of pure joy and laughter for Rufus. His mum, Lucy, elaborates, ‘I often use the word ‘joy’ to describe Rufus because happiness just doesn’t seem to cut it. Rufus, most of the time, nails the epitome of joy. You can see it welling up in him if you hang around with him long enough. It comes from somewhere most of us have to tap pretty darn deep into on an average day and it’s the same place he stores his giggles, where his pining for intense cuddles live and where the words that don’t have sounds are kept.’

Rufus’ development happens at a different pace to others but he continues learning and growing every day and reaches milestones in his own time. Lucy says, ‘He may not be able to stand, sing, spin around, say his name and interact appropriately with a newborn but you should see the effort he puts into reaching for toys.’

Sleep is difficult for a lot of Angelman children. Rufus has had sleep problems from an early age. He is now in a special large bed in his own room, so although he may be awake for most of the night, he doesn’t disturb the rest of the family. The darkness of the room gives him some rest and he gets up with plenty of energy again the next day.

Rufus looks out across the nursery, from near the snack table, one of his favourite spots. He is (currently) non-verbal, and has delayed development. The idea of being unable to communicate with their son was one of the hardest things for his parents to come to terms with.

Rufus’ epilepsy medication stored up high in the cabinet. Seizures affect around 80% of people with Angelman Syndrome, usually becoming evident by the age of 3. Rufus made it to 4 and a half with none, so it was hoped he was one of the ‘20%’. Sadly, he suffered a number of seizures during February 2018 and had to start using Epilim medication to control them.