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20 May 2018updated 24 Jun 2021 12:22pm

Ethan’s life with Williams Syndrome will be marked by charm as well as challenges

The rare condition typically leads to moderate learning disability and cardiovascular abnormalities but also striking verbal flair and a passion for music.

By Phil Whitaker

Ethan’s parents had already received one health scare: a heart murmur, picked up shortly after he was born, but it hadn’t turned out to be serious. Ethan was under hospital follow-up but no one seemed to think it would need surgical intervention.

Now this. “The health visitor said to bring him,” Ethan’s mum explained. “He’s late with his smile.”

Milly handed me Ethan’s “red book”. This is the parent-held health record, named after its bright red plastic cover, which contains all the information about a child’s growth and development. I looked at his six-week check. Most babies have developed a social smile by that age – he was now four months, and still no sign of smiling. The health visitor had also noted concerns about head control.

I turned to look at him, cradled in Milly’s arms. He was alert, eyes fixed on the beaded rope that attached his dummy to his baby-gro. One hand was reaching out, making erratic contact with the smooth white beads. His developing brain was hard at it, organising visual, spatial and tactile information into an evolving model of the world. This was reassuringly age-appropriate, but there was no getting away from the floppy tone of his trunk muscles. And there was something unusual about his facial features – chin rather small, nose oddly pointed.

“He’s due back with the paediatricians soon, isn’t he?”

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Milly nodded.

“I’ll drop them a line, ask them what they think.”

Together, the various findings were strongly suggestive of a genetic syndrome. There are in excess of 5,000 described to date. I’m familiar with the commonest – conditions such as Down’s – but accurate diagnosis of rare and usual cases is very much a specialist pursuit.

The paediatrician took blood for chromosomal analysis. This picked up an abnormality diagnostic of something called Williams Syndrome. It is rare, affecting around 1 in 18,000 people, so I did some book-work. There was some bad news: mild to moderate learning disability, and frequent cardiovascular abnormalities – hence the murmur. But many affected individuals lead full and occupied lives with support. There are intriguing characteristics, too: striking verbal flair and a passion for music. And Williams has been dubbed the “opposite of autism” – people with the syndrome have extremely sociable and empathic personalities. Sadly, their relatively low IQ coupled with difficulties reading social cues can make relationships problematic, depriving them of the interaction they thrive on.

Milly brought Ethan back a couple of months on. I was pleased to find her adjusting well to his diagnosis. It had been a huge and life-changing shock, she said, but she and her husband Tim were coming to terms. We had a good conversation about how, in earlier eras, individuals with Williams would simply have been accepted by their communities as just that bit different to the norm. And that’s how Milly and Tim have decided to approach things: they feel blessed with a son who has his own unique potential and personality, and who will bring as much charm to their family as he may pose challenges.

They’ve also joined the Williams Syndrome Foundation (WSF), a small charity dedicated to increasing awareness and providing support. Milly and Tim have been sent the WSF’s “blue book”, which mirrors the standard “red book” except that its milestones and charts are adjusted for a typical Williams Syndrome child. Rather than emphasising delay and disability it stresses the normality of Ethan’s development with reference to his Williams Syndrome peers.

The WSF was founded by affected families. It charges a nominal £10 per year for membership, and must be run largely on volunteer goodwill. The huge difference they make to parents, motivated purely by a desire to help others, gave me a renewed optimism for all that is best about our society, and the human heart.

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This article appears in the 16 May 2018 issue of the New Statesman, Israel and the impossible war