Children’s section

Children’s Section

Are you a Sibling?

If you have a brother or sister with MPS, Fabry or a related disease, it can be hard sometimes. You might love them very much, but there are times when you might feel sad, angry, upset or confused. You might have lots of questions about why your brother or sister is poorly, why they can’t do a lot of the things that you and your friends can do. You might also wonder why they need to have certain medicines.
It is always important that you talk about your feelings, whether they are good or bad.

The MPS Society has produced a fact sheet which can help you to answer some of the questions that you might have and help you work
towards making the things that you might find difficult that little bit easier.

Download our Information for Siblings.


Understanding Genetics

Have you ever wondered why some people have brown hair and other people have blonde hair, or why some people wear glasses and others don’t?

One answer to this is Genetics. Genetics is the science of who we are – All the instructions that help us to grow up and develop are found in our genetics, which we inherit from our families. They determine who you are and whether for example you will have curly or straight hair, how you might laugh, who you look like. Genes are passed through generations of your family.


The human body is very complex, we have lots of different organs that do different jobs. For example, our eyes enable us to see, our hearts pump blood around our body and our livers clean the blood and store up energy.  All the different parts of the body are made of a collection of tiny structures called cells.

There is a lot to learn about each of the little parts of a cell.  However, when thinking about genetics the most important one is the nucleus – the brain of the cell.  It tells every part of the cell what to do.  Inside the nucleus we find all the genetic information, or  instructions to make us who we are.

What happens if there is a mistake in our genetics?

Sometimes mistakes in genes don’t make too much of a difference but sometimes a mistake can mean that a child is born with a genetic condition. It is very important to know if a child has a genetic condition because they might need special medicine to make sure they are healthy or may need some extra help.

MPS, Fabry and related diseases are genetic conditions and can affect different people in different ways. To find out more, read some of our children's stories who have MPS, Fabry and related diseases which are genetic conditions.