After Jack’s diagnosis, we decided to join the Nystagmus Network – a UK charity run by individuals and families affected by the eye condition. It provides information and support to children and adults, and promotes research into possible treatments. A few days after subscribing we received a copy of their quarterly magazine Focus and a Parents Information Pack. It was reassuring to learn;
One week ago today our son was diagnosed with nystagmus (nys-tag-mus, “rapid involuntary movements of the eyes”, Oxford Dictionary) at Sunderland Eye Hospital. The previous afternoon our Health Visitor had come for Jack’s three month check and noticed almost straight away his eyes were moving from side to side and jumping when he tried to focus. She said she’d not seen it before and would like to refer him to a specialist to get him checked out. She said it could take a couple of months for an appointment, but as Jack is a lively lad and doing everything he should be at three months I never imagined it could be something serious or permanent. That evening we checked the internet to see what it could be and the only diagnosis we could find was nystagmus. We you-tubed videos of the condition and thought it couldn’t be that, could it?