What is it like for siblings if their brother or sister has Rett syndrome?

Siblings often say that they get on really well with their brothers and sisters who have Rett syndrome. Other siblings can find it difficult because lots of extra care and attention goes on their brothers and sisters with Rett syndrome which can make them feel left out. They can feel embarrassed if people stare at their brothers and sisters when they are out and about, because they are often in wheelchairs and behave differently. This can also make it hard to have friends round and do things that other families do. People with Rett syndrome can be funny and join in with family activities, and are good company. They often love to be involved in whatever is happening.

What causes Rett syndrome?

Rett syndrome is very rare which means that very few people have it. When a person with Rett syndrome is a tiny baby they don’t show any signs of it until they are between six and eighteen months old. This is when they stop doing things that they had learned as a baby, like crawling or saying words. People are born with Rett syndrome; you cannot catch it like a cold. No one knows why some people have Rett syndrome and it is no one’s fault.

What does it mean?

People with Rett syndrome have physical disabilities. Walking and moving is harder for them and some people will use a wheelchair. People with Rett syndrome have difficulties with talking and need the people around them to learn their communication methods.People with Rett syndrome move their hands repeatedly. People with Rett syndrome get upset easily and might cry or scream a lot. Many people with Rett syndrome have problems with breathing and eating and may need to have their food and drink through a tube. Many people with Rett syndrome have epilepsy which can be scary for the rest of the family. Many people with Rett syndrome grind their teeth. Some people with Rett syndrome get scoliosis in their back. That means that their spine becomes curved and some of them might need surgery to correct it. Some people with Rett syndrome have a learning disability. Some people with Rett syndrome have problems with sleeping.

People with Rett syndrome are able to learn just like anyone else, but because of all the physical struggles and communication differences, they need more time and specialist help.

What treatment is there?

There is no cure for Rett syndrome but people who have it can be helped in lots of ways. People with Rett syndrome:

• can have medicine to help improve their breathing and moving
• can have medicine to help with their epilepsy
• might wear a brace to help keep their back straight
• might wear splints on their hands to help them use their hands
• can get help with getting dressed, eating, moving and communicating

Children with Rett syndrome can go to specialist or mainstream school but wherever they go to school, they will need a lot of physical help and support with their communication and learning.

Most children with Rett syndrome go to special schools where they can get the extra help they need. When they become adults they will need a lot of help from other adults to help them have full lives where they are able to make decisions and communicate their needs, wants, opinions and thoughts.

This information has been approved by Rett UK March 2024