Finding Family

By Lorna Callery-Sithole

Our son Nevanji was diagnosed with Williams Syndrome at 3.5 years old in April 2024, and we spent the following months coming to terms with the diagnosis of a condition we never knew existed.

To be honest, it was a real lightbulb moment when his consultant explained more about Williams Syndrome and we finally had answers to why Nevanji’s development was delayed so significantly, why he was afraid of loud noises, why he was unaware of dangerous situations. But it was also a difficult time spent processing a cacophony of emotions internally whilst on the surface pretending that everything was the same as it’s always been.

But it wasn’t the same; we had so much to learn about how best to support our son. I read whatever literature I could get my hands on to try and understand the condition better, but what I felt most of all, was complete and utter isolation. No-one else I met understood the condition and we didn’t know anyone else who had Williams. Where were Nevanji’s peers and role models with WS? We found them at the Williams Syndrome Mini Convention after being signposted to the WSF by a friend of a friend and fellow parent of a child with WS.

For the first time, we had a better understanding of Williams Syndrome; being able to meet other people with WS of varying ages, helped us to imagine what Nevanji’s future might look like, and speaking to other parents was invaluable. Our kids had such an amazing time, and it was important for them to make friends with other people with WS and become part of this nurturing community, which is so important for the whole family, siblings included. I feel like we have found our WS family and life-long friendships were made that weekend.

The talks from guest speakers Professor Jo Van Herwegen and Dr Fionnuala Tynan were so educational and came at a pivotal point in Nevanji’s journey where we were considering options for school and what the educational landscape will look like for him. I felt that I came away from the convention more educated and with more confidence to make decisions on behalf of my son and to fight for everything that he may need to support him on his journey.

I can’t thank the Williams Syndrome Foundation enough for giving us this amazing opportunity and continuing to drive research, education, and awareness of WS which creates a lasting and positive legacy for so many people with Williams and their families. We will definitely be back next year and I’m sure this will become the highlight of our family’s social calendar!

Lorna.