Thank you for visiting us following the recent diagnosis of your child. Dealing with a diagnosis of a rare genetic condition such as Williams Syndrome can be frightening and overwhelming; everyone processes this news differently.

  • You may be feeling a sense of loss for the anticipated future you had envisioned for your child.
  • You might be angry as this is a completely random occurrence – why you / your child?
  • You might be feeling overwhelmed and anxious about the challenges that you / your child may face. 
  • You might even feel a little relieved if you have been waiting for a reason for the challenges your child is already facing.
  • You might need support in dealing with these feelings, while we are happy to talk with you, please consider visiting Rare Minds Well-being Hub to help you with this. Early Days – Rareminds
  • You probably have a lot of questions about what this diagnosis means for your child, your family, and your futures.

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We are here to help answer those questions.

We have mums of children with Williams Syndrome on our staff who are happy to speak with you (0208 567 1374) or if you would feel more comfortable, email enquiries@williams-syndrome.org.uk. We have lots of resources to share with you, those written by professional researchers are available within our website, and we have many more in our members’ area.

To access our members area, you will need to join us as a member – this provides opportunities to meet other parents and families, both via zoom and in-person, when you are ready to do so. Digital membership is free. Full membership is just £10 a year. More information can be found here.

We are here to help 

Contact us: 0208 567 1374 

Email us

So, what next…?

The first thing to remember is that your gorgeous baby/child is still the same baby/child they were before you received this diagnosis. They haven’t changed. You just have some additional information about them now which you can use to ensure that they get the support they need to reach their potential.

Referrals

Your baby/child should be under, or referred to, a paediatrician and/or a community paediatrician. These will be your gatekeepers to access other health professionals and further services. Please share our clinical guidelines with them so that they can see the checks that we recommend for your baby / child. In addition to these appointment referrals, we would expect that you baby/child should also be referred for:

  • Physiotherapy
  • Speech & Language Therapy
  • Portage / Play Therapy
  • Occupational Therapy

Early Development

Your baby / child will likely be smaller because of Williams Syndrome. We have Guidelines with WS height & weight charts which you can now use with your health professionals. These can be downloaded here (or posted to you if you join as a paid member (£10 per year)).

If they are failing to thrive, please ask for their calcium levels to be checked as up to 15% of babies with WS go on to develop Hypercalcaemia which can, if untreated, cause kidney stones.

As a rough guide, most children with WS take twice as long to reach developmental milestones in comparison to their neurotypical peers, so please don’t worry about what they can’t do – they will get there in their own time and it will feel twice as rewarding!

  • Hypercalcaemia, if present, will affect your baby’s appetite, they will likely lose weight and be very irritable. Once treated, a low-calcium diet is recommended including using boiled tap water. Low calcium formula milk can be ordered on prescription.
  • Weaning can be difficult for some families as a number of children with WS struggle with more textured food. If this is a concern for you, please click here. A Speech and Language therapist can help with feeding concerns.
  • Language delay is typical of young children with WS, learning Makaton can help with communication and speed up language development. As their language will likely be delayed, so too will their understanding.
  • Reflux is also a common problem, so please speak to your GP if colic symptoms do not improve.
  • Sleep can also be an issue, sometimes due to reflux / silent reflux and/or because children with WS produce less melatonin (the sleep hormone) and too much cortisol (the awake hormone). Please read this sleep study here and talk to your GP if these problems persist and/or are impacting your mental health.
  • Childhood vaccinations are just as important for your child as any other child and their diagnosis of Williams Syndrome should have no impact on them receiving these vaccinations.
  • Crying in babies/ young children with Williams Syndrome can be for exactly the same reasons as other babies, tiredness, hunger, pain, discomfort, or boredom, but there can be other reasons. Hyperacusis is a sensitivity to loud noises and/or noises of certain pitches which is common in individuals with WS.
  • Sensory issues are also common, with some children struggling with strong smells / tastes or food textures. Some children also have issues with interoception – translating what their body is telling them. Interoception can also be delayed, some children take a long time to recognize when they are feeling full when eating a meal. It will likely take your child longer to recognize when they need to go to the toilet, so potty training is likely to come later. An Occupational Therapist can help with this.

Learning

  • Learning developmental milestones may be delayed, but learning is a constant and ongoing process so continue to encourage your child and reinforce their learning regularly. 
  • Super friendly behaviour is almost a trademark in children with Williams Syndrome, but it is important to explain who is in a child’s inner circle for hugs and kisses and who isn’t. This gets easier as they get older as does the concept of personal space.
  • Early Learning Settings can be really beneficial for cognitive, language and social development and 2 year olds with SEN can apply for 15hours a week funded places in nurseries – mainstream or Special Needs. Starting a special needs nursery does not tie your child to a special education. However, it is extremely difficult to move from SEN to mainstream once the decision has been made for their full-time school placement.
  • EHCPs (Education, Health & Care Plans) are required to access special education placements and to legally bind education authorities to provide a level of support in mainstream settings (e.g. funding for a learning support assistant for an agreed number of hours). The Williams Syndrome Foundation can help with preparation for EHCPs, so please do get in touch!
  • Guidelines for Educators are also available for you and your school to download here or we can post hard copies out for families with full paid memberships.
  • OWLs (Own Williams Learning Booklets) are also available to download here to support young learners with WS.
  • Celebrate your child’s achievements with us and read about the achievements of our other members with WS in our twice-yearly magazine.

Other information

  • WSF PAP (Professional Advisory Panel) – we are very lucky to be supported by esteemed professionals from medical, educational, and therapeutic backgrounds. The PAP are happy to answer questions from our members. Click here to view our PAP
  • Webinars with health, education and therapeutic professionals are also offered periodically. The vast majority of our webinars have been recorded so form a library for you to access. We have organized our resources by topic here.
  • Support is available from our WSF Team and our PAP, so please get in touch if there are challenges that you need support with. We also offer Online Support Groups to connect parents of children with WS aged 0-4 every other month. Face-to-events are also held to connect our member families in different parts of the country – please check your monthly e-news for upcoming events in / near your area here.  (All of our events are subsidized by the WSF). We also connect our members via our WSF FB group.  Many parents say that the parent-to-parent support that they find within the WS community is the most beneficial support that they receive as it comes from a lived experience of WS.
  • Benefits are available for children with WS as they are for all children with disabilities. Please click this link to visit our benefits page.
  • Family Conventions are held every three years by the WSF, bringing together 150 families and a host of professionals providing information on the challenges of WS and how to manage those challenges. It is also an excellent opportunity for families to connect and to share support.
  • Our next convention will be held in July 2025 at Butlin’s Skegness. Here’s a little video from our last convention to give you more of an idea of what to expect. Convention video. 

Watch Ethan’s story about being diagnosed with Williams syndrome at 11 months old.