Joy unfiltered: What is a child who has William's Syndrome really like?
- Naz Hernandez
- 59 minutes ago
- 6 min read
Don't read this article if you want a check-list for William's Syndrome (WS). Read this for quirky 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 lesson: two identical boys with Williams Syndrome (WS). They completely changed my life - from birth to getting the diagnoses and 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 was the uncertainty of the future that was hard to bear. Now, as time goes on and 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.
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 feature (which it kinda is), in reality it transforms the way you interact with your child. Music isn't just something enjoyable - it's an experience that sometimes 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 - 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) This is where the senses are connected. An artist sees colours when they hear notes or smell something when they see colour. Famous artists afflicted with this blending of the senses are Pharrell Williams, Stevie Wonder, Duke Ellington, Franz Liszt etc. There is a similar pattern of visual areas activating for people with WS 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 we were recovering in High Dependency Unit (HDU) together. We sat snuggling on the bed and though he was not yet talking, he made clear he wanted to watch some videos. 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. However, his tiny little finger reached out clicked play.
Pavarotti's operatic face came to life, rising and falling notes with the intensity of voice. His face contorted with emotion. I felt my own emotional centres light up attempting 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
Do individuals with Williams syndrome possess absolute pitch? - PubMed
Simner J, Hubbard EM, eds. (2013). "A brief history of synesthesia research". Oxford Handbook of Synesthesia. Oxford, UK: Oxford University Press. pp. 13–17. ISBN 978-0-19-960332-9. Retrieved 25 February 2018.
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, being aware of it can prevent mistakes being made during simple procedures.
Does it change your life? No, but its cool to know in the same way Its cool to map the moles on their skin. Its unlikely to have a big impact on our Kiddos except perhaps 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 in a book you can expect their first words to follow shortly after. 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 than 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.
GLP has been a prominent feature for my child with WS but through all my reading and speaking to others, there is little data that says all children with WS are gestalt language processors. Anecdotally asking my WS network, the features seem to be common amongst us. It also makes logical sense that WS language would be driven in this way rather than the typical analytical language processing (single words) - 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 speech and language therapist to find the best way to support them.
If you'd like to learn more about the two different forms of language development here are some links below. If you're interested, pop a comment and I can write a blog in more detail about GLP in particular.
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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