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 not a disease, no one can catch it. It is not something to be cured. Down syndrome is just part of how someone is and it's not even the most important part. A sibling with DS is always going to be your brother or sister first, and look more like you and your parents than other people with DS.

As long as there have been people around there has been people with Down syndrome. Stone statues from the ancient South American Olmec civilization show people with Down syndrome who were possibly treated as household gods and spirit helpers. The art of Europe has many paintings where people with Down syndrome can be seen as shepherds or angels or just people in the crowd. Today you might see cute kids with DS in ad campaigns or young women with DS on the catwalk at Fashion week.

It's more likely you'll see people with DS at school or the gym or dance class, at the shops or playing sport, just going about their lives like the rest of us.

What does it mean though, just in everyday life, to have DS? Well the way that extra 21st chromosome affects people with Down syndrome varies a lot from person to person. There are actually 120 indicators that make up the syndrome but no one person will have all 120. Some things are common to all people with DS, like almond shaped eyes and beautiful eyebrows, and everyone who has DS will have some degree of intellectual disability. This means it will be harder for them to understand some things and will take them longer to learn and to do things. For instance, very young children with DS take a bit longer to learn to walk and talk, but generally they get there. Most people with DS learn to read and write, use computers, catch buses and trains, all the usual stuff. Some people with DS will need more support than others to learn and live with a degree of independent. Just like you, your brother or sister with DS is a unique individual and will grow and develop in their own way and in their own time.

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. Sometimes people with DS have additional health issues but these are not part of the syndrome and should be treated the same way as when other members of the family are sick. 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 DS. And just like all children, children with DS 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 DS 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!

Because DS has been around so long and is relatively common there are lots of other people who have been in a similar situation to you. Down Syndrome NSW (DS NSW) is a good place to start. This organisation was set up by families of children with Down syndrome in 1980 and is still run by families, for families. DS NSW (downsyndromensw.org.au) has an info line (02)9841 4444 or 1800 811 629 (outside the metro area) and some excellent resources, like 'Fasten Your Seatbelt – a crash course on Down syndrome for brothers and sisters' by Brian Skotko and Susan Levine. DS NSW also runs workshops just for siblings sometimes and can link families of a similar age up together. There is a lot of good information and support out there and DS NSW can help you find it.