Isla was 11 months old when she became unwell. She began falling over and became very shaky. Her mother, Morag, also noticed that her eyes were moving in an unusual way. After many tests, she was diagnosed with Opsoclonus myoclonus syndrome (OMS) also known as dancing eye syndrome, and neuroblastoma, a rare childhood cancer.
OMS is a rare childhood neurological disorder presenting with jerky movements of the eye and body. Typically appearing when a child is around 18 months old, most affected children show persistent symptoms including speech, cognitive and behavioural problems.
There are currently only around 100 children in the UK with dancing eye syndrome and the rarity of the condition has made it difficult for clinicians to draw robust conclusions about the most effective treatment methods.
“Initially we were so relieved that the cancer was only stage one,” says Morag, “but then it gradually hit us that actually, OMS is such a cruel condition, not helped by the fact there’s so little information. Isla has been left with learning difficulties and the rarity of the condition means the school system has no idea how to help her.”
The family have moments of elation when Isla is well but this is coupled with the frequent relapses where she suffers dizziness, can’t control her eye and will shake and fall over. Isla’s illness has had a huge impact on the rest of the family. Morag had to stop work and the older children have received a lot less time and attention which has been hard.
How we’re helping children like Isla
“Sparks’ support will enable further research and hopefully a cure’ explains Morag ‘but just as important by recognising the condition, Sparks can help highlight it and raise the profile of the condition which means more people will know about it and be inspired to help.”
Find out about our research project looking at children with dancing eye syndrome.