Williams Syndrome – First thoughts

This was a bit of a shock. Firstly it is worth pointing out that the doctor believe that although this can happen spontaneously, due to certain characteristics I have, our son would have inherited it from me. So this is all on me, it turns out.

The doctor mentioned that they will make a referral for me to be tested but I’m not sure to whom as they don’t have any of my details (I don’t think).

I’ve done a lot of quick googling and there are two main resources for Williams Syndrome

https://williams-syndrome.org.uk/ –  The UK based Organisation

https://williams-syndrome.org/ – The US based Organisation

Something that is interesting mentioned on the UK site is that Williams Syndrome is “…a randomly occurring genetic condition.”, which suggests this is not something that would be passed from from father to son.

One of the similarities we both have is ‘Starburst Eyes’. I’ve looked at myself in the mirror a million times and never noticed it. Our son has the most brilliant ‘Starburst’ pattern in his eyes. He also has blue eyes compared to Wiggly Squiggle’s brown and it is more noticeable in blue-eyed children. My Lovely Wife pointed out that I have the same. What is strange is she has looked into my eyes loads before but never thought about how it isn’t “typical” but now she is looking for it, it stands out so much.

Physically people with Williams Syndrome can have a flat-bridged nose, wide spaced teeth, and long philtrum. Some of these visual charactistics can be seen in the many photo of people with Williams Syndrome. I don’t have any of these symptoms. Our son could be sad to have a ‘flatter’ bridge to his nose and maybe a ‘long’ philtrum. Its hard to say, he is a new born baby.

With regards to how people with Williams Syndrome are socially, I’m going to share a quote from Wikipedia.

“Dykens and Rosner (1999) found that 100% of those with Williams syndrome were kind-spirited, 90% sought the company of others, 87% empathize with others’ pain, 84% are caring, 83% are unselfish/forgiving, 75% never go unnoticed in a group, and 75% are happy when others do well.” – Wikipedia

This sounds excellent. All good qualities you’d like for anyone to have.

When it comes to health things take a more challenging tone. Not only to Williams Syndrome babies have lower birth weights, problems breastfeeding and issues sleeping at night, they also often have heart issues such as a murmur. As the child gets older it may have developmental issues around language and motor-skills, as well as gastric issues. Finally, they may also be smaller both physically and in weight of children/people of a similar age.

There is a worrying line on the Wikipedia entry that really concerns me.

“Adults are typically limited in their ability to live independently or work in competitive employment settings”

This suggests that what I know of as a ‘typical’ life wont be what my son gets to experience. That upsets me greatly as no-one needs a harder experience of life. Obviously, having identified this at an early age we will be able to give our son the best chance at the most ‘typical’ life – a life with a few additional challenges as possible. Where additional support is required then hopefully we can make sure that this is in place as needed.

I’m going to need to focus a lot on the positives here. Some of the negatives are really knocking me for six.

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