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Batten disease is a condition that affects a person’s brain. The brain controls all the things that a body can do. When a person with Batten disease is a tiny baby, they don’t show any signs of it until they are between six months and 5 years old. When a child has Batten disease, their brain gets affected more as they get older.

What is it like for siblings who have a brother or sister with Batten disease?

Siblings who have a brother or sister with Batten disease often get on really well with them. However, siblings also say that things at home can be quite difficult. They say that their brothers and sisters need lots of extra attention from a parent, which makes them feel left out. They also say that they worry about their brother or sister’s health and what will happen to them.

What causes Batten disease?

Batten disease is a condition which somebody is born with. It is passed from parents to children and cannot be caught from someone else. There are different types of Batten disease. Some of the types are called CLN1 (infantile), CLN2 (late infantile) and CLN3 (juvenile).

What does it mean?

When children with Batten disease get older they will have difficulty with walking, eating and talking. They will lose all of their eyesight although they will still be able to hear you. Some children may have changes in their behaviour or sleep.They will find it hard to remember things when they get older. All children with Batten disease have epilepsy. It is a progressive condition – this means that it gets worse as the person gets older.

What treatment is there?

There is no cure for Batten disease but people who have it can be helped in lots of ways

  • medicine to help with their epilepsy
  • help with getting dressed
  • help with eating, moving and communicating

Most children with Batten disease go to special schools where they can get the extra help they need. Children with Batten disease, their siblings and their parents can spend time at a children’s hospice where the whole family can be looked after and where they can enjoy time together.