My First Questions about Williams Syndrome

Here are the common questions that siblings ask about their brother or sister who has Williams syndrome (WS).

1. Why does my brother or sister have WS?

There is no reason why your brother or sister has WS. It’s just something that happens. It’s a bit like asking why you have freckles or dimples. It’s all to do with our genes. Our bodies are a bit like computers which are programmed to work in certain ways. Our bodies have genes which hold the codes for how our bodies work. We get genes from our parents. Our genes hold the code for the colour of our eyes, whether we have straight or curly hair, whether we can taste cucumber and whether we can roll our tongues, among other things! It’s funny what are bodies are programmed for! All of that information is held in our genes. 

In some human bodies, a person can have extra genes or missing genes. This can mean they have a genetic condition. Then their bodies work a bit differently to other people. There is a condition called Down syndrome and people with that condition have extra genes. A person with Williams syndrome has about 26 of their genes missing. There’s no reason for it, it’s just something that happens. 

This also means that it is nobody’s fault. Nothing your Mam or Dad did caused your brother or sister to have Williams. Also, nothing you did caused your sibling to have Williams. The good thing is that your brother or sister is not the only one with this condition, there are lots of people in the world with Williams syndrome and that means we can learn about it.

2. Will my sibling die from WS? 

The great news is that your brother or sister will not die from having Williams. Phew! That can cause a lot of worry, wondering what the future holds. However, your brother or sister might have some health conditions that you don’t have. They might have a heart problem, or kidney problems, you might notice that they walk a little bit differently to you or that they need help doing things. 

People with Williams might have some issues with their health, but doctors are able to help them. Children with Williams usually see a doctor regularly. A doctor for children is called a paediatrician (pronounced peed-ee-a-trish-ann). Your brother or sister might need to go to a hospital for check ups or might need to stay in the hospital for a day or two to check how Williams syndrome affects their body. But there is nothing to worry about because doctors and nurses understand Williams syndrome much more now than they ever did. They will do everything they can to help your sibling and to make sure they are healthy and well. 

3. If I have children, will they have WS?

If you have a baby in the future, there is no reason why your baby would have Williams. You are at no greater risk of this happening than anyone else. Just because you have a family member with Williams does not mean you are more at risk. 

4. Can my brother or sister with WS get married when they are older?

Sometimes we want our brother or sister to have the same hopes and dreams that we do. Even without having Williams, some people would like to have a boyfriend or girlfriend, some people would like to get married or have children, but other people don’t want these things. There are a few adults with Williams who are married and some who have children, although not that many to be honest. A lot will depend on whether your sibling would like these things for themselves. It will also depend on how much support your sibling needs when they are grown up. 

5. Will my brother or sister with WS be happy in life?

There is every reason to believe that your sibling will live a long and happy life, but of course none of us know for sure. We do know that people with Williams are more likely to be happy when they have friends and family who talk to them regularly, when they have lots of social occasions (like visiting people or going to events), when they work and feel that their lives are worthwhile and when they know they are loved. This is the same for all human beings, so your brother or sister is no different.