PURA syndrome
For brothers and sisters
Your brother or sister has PURA syndrome. Here’s what that means.
It’s something they were born with. Inside our bodies are tiny instructions called genes. In PURA syndrome one of them, called PURA, has a small change. That makes some things harder for them.
You can’t catch it, like a cold. And it’s nobody’s fault.
Some things are harder, like talking, walking and eating. Lots of people with PURA understand more than they can say, so keep talking to them!
Some have seizures. A seizure is a sudden burst of electrical activity in the brain. It can make their body shake, go stiff or go still for a bit. If you see one, tell a grown-up straight away.
All your feelings are OK: proud, happy, cross, sad or worried. Talking to a grown-up you trust really helps. Sibs is a UK charity just for brothers and sisters of disabled people: sibs.org.uk