I talk to parents following a Williams Syndrome diagnosis.
I am Natalie, the Membership Liaison Officer at the Foundation and I have a 7-year-old daughter, Lilia who has Williams Syndrome. You will more than likely speak to me at least once during the application process of becoming a member, and I’m happy to try and answer any of your questions you may have at that point but please also keep in mind you can contact me at any stage if you need help or advice.
By the time Lilia was 10 months old, I had been to numerous health visitor and GP appointments without any action being taken to address my concerns about my daughter’s health. I eventually paid for a private appointment where I was immediately told that Lilia was failing to thrive. Tests began immediately, with a scan on her kidneys being organised for the following day. Two days later we were rushing her to A&E, where she stayed for just over a week having intravenous transfusions for hypercalcemia. I was told by the paediatrician they suspected Williams Syndrome and would do a genetics test. They moved us to a private room, where I lay awake all night on my phone looking at ‘What is Williams Syndrome?’ as I had never heard of it before. I finally came across a site that listed the symptoms and I knew there and then that Lilia had Williams Syndrome because everything finally made sense.
I can honestly say that from that point, life was finally manageable – knowing not to give her dairy because her kidneys were not able to tolerate it meant mealtimes became tolerable. We got the official genetics test results around her first birthday and although I did shed a tear, I already knew in my heart that she had Williams Syndrome. It was a turning point, but it made life easier knowing what we were dealing with, so I wasn’t as devastated as I thought I’d be. In fact, within months of her diagnosis, I became a regional coordinator for the Foundation so I could make friends with other families.
Lilia crawled around 20 months and walked at around 26 months, hummed tunes before she could talk and said her first words at 3 and half years old, she started at a mainstream school with special needs provision at 4 years and 1 month, saying only a handful of words and nowhere near potty trained. Although she did develop at school, Lilia’s needs were not met and they were unable to keep her safe, forcing me to remove her and home school her until she got a new placement. Being a child with and EHCP, getting a new school placement was not straight forward. She is now settled in her new school, although it has taken some time to get her settled and she now has 2:1 support within the special needs provision. Lilia is now in Year 3 and communicates well, has a good reading ability and her teacher tells me she’s good at maths, surprisingly.
Lilia has a real passion for music, and she loves singing, listening to music and tries to play any instrument. Music can calm her when she’s having a meltdown, in fact, it’s one of the best ways of engaging her and getting her to concentrate so we tend to always have music on at home. Lilia has had music therapy, joined in mainstream music classes and goes to choir at school.
As I have volunteered as a WSF regional coordinator for 6 years and worked for the Foundation for 4 years, I have met many individuals with Williams Syndrome from new-born babies to adults. They are all unique and all an absolute pleasure to be around, lighting up the room, seeing positive in everyone, and entertaining you beyond belief. There is so much to look forward to. We are in this together and we are here to help and support you.
If you would like to find out more about our membership, or are already a member and have a question, please call: 07838 348577