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Joy unfiltered: What is a child who has William's Syndrome really like?

Updated: Dec 27, 2025

Don't read this article if you want a check-list for William's Syndrome (WS). Read this for unusual facts, development tips and the real reason why WS brings joy to everyone.


I’m a doctor, and I thought I knew rare conditions. Then life handed me the most profound reality check: two identical boys with Williams Syndrome (WS). They completely changed my life - from birth to getting the diagnoses and then at 3 months old losing one of my precious boys to his heart condition.


In all honesty the disability itself has never bothered me; it has been the uncertainty of the future that is harder to bear. Now however, as my surviving son's personality shines through, I feel the greatest of pride in how loving, caring and blissfully connected he is to other people. For me, he is the raw 'goodness' of humanity and the uncertainty of the future feels less heavy.


Every time I read about WS it is often the same list of diagnostic checklists - the facial features, the medical problems, generic IQ stats and so forth. So I would like to share with you the interesting extra facts we have discovered about WS, some better known and some lesser known. As a doctor, I think the syndrome is fascinating and there are some pretty cool features. Here are a few to start.


Did you Know?


The true meaning of music in WS

Their strong affinity to music is one of the more famous features of WS. Although it is sometimes glamorised as a magical talent (which it kinda is), in reality, it will also transform the way you interact with your child. Music isn't just something enjoyable - it's an experience that feels bigger than anything else to them. The research suggests that people with WS have a strong emotional and sensorimotor connection to music, which just means they can be deeply moved, spontaneously dance or change their emotional state with music.


This doesn't necessarily mean your WS child will become a music aficionado or pitch perfect artist however, it is a major tool for how you connect, love, and teach your child. Music helps all humans connect and it is one of the first ways we develop our language - and our children use this to their advantage!



In our family, we include music in our day to day not as a nice to have, but as an essential part of our communication. My son said his first words through completing the lyrics of a song and although he can not yet at the age of 5 hold a conversation with strangers, he can mimic sounds and intonation in such a way that people always smile, turn to look at him and speak back.


I have a favourite research paper (yup guilty!) which shows how the part of your brain that is responsible for vision lights up when people with WS listen to music. This does not happen to typical humans, apart from a small percentage who have 'Synaesthesia' (1-4% population). Synaesthesia is a condition in which the senses are connected. An artist sees colours when they hear notes or smell a particular aroma when they see colour. Famous artists afflicted with this blending of the senses are Pharrell Williams, Stevie Wonder, Duke Ellington, Franz Liszt etc. Although not the same, there is a similar pattern in people in WS where the visual cortex in the brain activates when they hear music.

Music helps them see.


One quite beautiful example of my son's connection with music happened during a particularly stressful emergency hospital admission. When he was 2 years old, we had been through a very challenging resuscitation the prior day and were recovering in High Dependency Unit (HDU) together. We sat snuggling on the bed and though he was not yet talking, he made clear that he wanted to watch a video. We had a selection of music videos of different genres for him to choose from. He selected Pavarotti's 'Nessun Dorma'. Now at this stage, he had a very short attention span and even children's cartoons never held his interest for longer than a few seconds. Nevertheless his tiny little finger reached out clicked play.


Pavarotti's operatic face came to life, the rising and falling notes mirroring with the intensity of voice. His face contorted with emotion. I felt my own emotional centres light up in an attempt to heal the pain of that awful weekend. I cried quietly watching his tiny face absorbed in a frown, watching the entire video through. The whole HDU had gone silent and the sound of Cocomelon was drowned out for the duration of the song. It was a powerful moment for those of us that were there and undoubtedly a very unusual choice for a 2-year old to sit silently through.


References



They might have an extra rib.

Yes you read that correctly. Apparently up to 74% of children with WS have a 13th rib arising near the first lumbar vertebra. Sometimes it is an extra rib on both sides but it may also be extra one on a single side. That is much higher than the general population (2%).


The extra rib is most commonly picked up on X-Ray imaging or it may be missed if no-one is looking for it - and why would you be? It does not have any clear importance on day to day life, however in non-WS people research does suggest it may contribute to back pain. Also, if you are ever having a procedure involving the spine/chest wall, being aware of it can prevent mistakes. During some procedures clinicians may need to count ribs to find anatomical positions, so an extra one makes a difference!


Does it change your life? No, but its cool to know in the same way its cool to map the moles on their skin; or perhaps find an extra spot to tickle them.


References:


First words come after rhythmic banging

In typical child development, your baby's first words are associated with purposeful pointing. When they begin to point to images or objects you can expect their first words to follow shortly after. In WS first words follow rhythmic banging rather than pointing.


I spent countless hours trying to point things out to my son, near or far, in a book or at the zoo, but his response was demoralising. He chose to look at the leaves of a tree over the monkey swinging through it. Instead I half gave up and worked instead on singing or interacting in the ways he did seem to 'give back' on. One of the earliest songs we liked to play at the dinner table was 'We Will Rock You'. My daughter, my husband and I banging on the table in rhythm as he watched intently and tried to do the same. After a few weeks of this he finally sang his first full sentence 'We Will, We Will, Rock You'. From there we replaced 'Rock You' with the names of all the family members, so he could begin to call us by name.


This pattern of learning language, which begins with mimicking intoned phrases (musical phrases) only later leads to understanding of the mimicked word or phrases. This is called gestalt language processing (GLP). Although first identified in 1980s, there has been a lack of research in GLP and been under recognised in the field until very recently, where it has become more ‘mainstream’. We are lucky in 2025 that the tide is changing and there are now some great strategies and sources of information on GLP and how we can support any child with this type of language development.


Although GLP has been a prominent feature for my child with WS there is little data to support how common it is not that children with WS are typically gestalt language processors. Anecdotally however, asking my WS network, the features seem to be common amongst us.


It also makes logical sense to me that WS language would be driven in this way rather than the typical analytical language processing (single word learning)- given they are drawn to intonation and music of words, rather than the words themselves. This is not a proven fact however and every child should be assessed by a speech and language therapist to find the best way to support them individually.


If you'd like to learn more about the two different forms of language development, the links below have an overview or the key features.


References:



About Naz



I’m a former doctor with a background in palliative care, geriatrics and general medicine. I am now exploring life through writing and reflection. I write about grief, loss, healing, and living life with two children and a husband. I share my personal journey in the hope it helps others feel seen, understood, and a little less alone.


We started our not-for-profit, Cafelias, in memory of Elias, our son. Our aim is to help reduce the isolation of being a special needs parent, child loss and being a disability family. Did you know we also weekly run groups for SEND children in partnership with OXFSN? click the link find out more.




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