Every year, all over the world, about one baby out of every 1000 born will have Down syndrome. In terms of disability that makes it pretty common. If you have a brother or sister with Down syndrome you might not be as special as you thought!

What is Down syndrome (DS) anyway?

Our bodies are made up of millions of cells and in every single cell in our body there are chromosomes. The chromosomes are like a genetic map for how we will grow and develop. The standard number of chromosomes in each cell is 46 and they are arranged in pairs. But people with Down syndrome have an extra chromosome on the 21st pair. So it's a 'plus one', giving them 47 chromosomes in total and making the map of how they grow and learn different.

That 'plus one' happens way before a person with Down syndrome is born. It just happens. Nobody knows why and it is nobody's fault. Down syndrome is just part of how someone is and it's not even the most important part. A sibling with Down syndrome is always going to be your brother or sister first, and look more like you and your parents than other people with Down syndrome.

How can I best care for someone with Down syndrome?

People with Down syndrome don't need any special care. What they might need, especially from their families, is some extra consideration, a bit of extra time to learn and a bit of extra help. It is important to remember that the extra chromosome will not be the biggest influence on how your sister or brother develops or lives their life. It won't be the biggest thing in your relationship with your sibling either. Like all children it is family, environmental, social and cultural factors that shape your life and the life of your brother or sister with Down syndrome. And just like all children, children with Down syndrome need to be cuddled and played with, loved and included.

Where can I get support?

Having a sibling with Down syndrome can have some unique challenges but it is by no means all bad. Some people who have a sibling with Down syndrome talk about their fears and concerns for the future, which is perfectly reasonable, or feel they are responsible for protecting their sibling all the time. You are not alone!

If you'd like some more information or support, Down Syndrome NSW is a good place to start.  We have a library with books we can refer to you and we are always here, available for a chat.  We run workshops just for siblings and can link you with families of similar age to share experiences.

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More Information

Down Syndrome Today

Download booklet

Carers NSW

Video resource for young carers