“Leila’s condition is so rare that we don’t understand what her diagnosis entails.”
Dancing eye syndrome affects one in every 10 million children. Without research funded by charities like Sparks, it means a future of unanswered questions for families like Leila’s.
Leila seemed perfectly well when she was born. But when she was 21 months old, her mum, Georgina, noticed slight eye movements. After a few weeks, Leila started becoming clumsy. Four days later she couldn’t walk any more.
Suspecting an ear infection, the family’s GP advised that they take Leila straight to hospital. Luckily, there was a neurologist there who had seen ‘dancing eyes’ before, so the family were sent for tests and received a very quick diagnosis: dancing eye syndrome (DES).
The condition, also known as opsoclonus myoclonus syndrome (OMS), is a very rare neurological disorder that occurs during early childhood. The condition makes Leila very wobbly: unsteadiness (ataxia) means she falls over a lot, while the involuntary rapid eye movements can make her very shaky and some days she finds it difficult to eat or even hold a pen.
MRI and CT scans revealed that Leila also had a tumour. Doctors diagnosed her with neuroblastoma, a rare type of cancer that affects around 100 children in the UK every year. Her brain had started to attack the tumour, causing a neurological reaction that caused her OMS.
After a course of steroids, Leila underwent surgery to remove as much of the tumour as possible. But she also required another six rounds of chemotherapy to shrink what remained and to help the symptoms caused by her OMS. To prevent further illnesses while the chemotherapy took effect, Leila had intravenous immunoglobulin treatment to blast her body with a hormone designed to make her feel well and modulate her immune system.
“We were worried out daughter would die.”
“Our initial concern was Leila’s tumour – we were worried our daughter would die,” says Georgina. “OMS is so rare that we don’t understand what her diagnosis entails.
“After Leila had the surgery to remove the tumour, we realised the main condition – the main worry – was not the cancer, it was the OMS, which is a life-long disorder.
“In Leila’s case, OMS stops her from having the social skills of children her age. She also has wobbly moments every day, so I have to watch her and look at the risks to make sure things are safe. Some days, she can’t feed herself or drink.”
Every four weeks, Leila returns to hospital to have an intravenous immunoglobulin infusion, and she receives chemotherapy treatment as and when needed. In between, she also has physiotherapy and neurology appointments.
Despite the challenges of Leila’s day-to-day life, she’s still able to do the things she enjoys. For her birthday earlier this year, Leila’s best friends came to her home for cake followed by a walk in the woods to collect leaves and conkers, and they played ‘pretend’ fishing in the pond. “Leila just loves being outside, in the woods, in the garden, anywhere,” says Georgina. “And she loves playing with playdough, playing with her sister Esme – I hear them playing make believe games - and being on her slide in the garden.”
“Research could fill in the gaps to our questions.”
Georgina is quick to praise Dr Ming Lim, the expert neurologist in charge of her daughter’s care: “I have full faith in him, but research is desperately needed because the condition is just so rare that many of the things I ask our consultants, they can’t answer – they don’t know. There’s not enough information out there. Research could fill in the gaps to our questions.
“Fundraising for charities like Sparks is very important. Researchers need the funds to carry out research, so that families like ours can get those questions answered to find the right medication.
“I don’t know if research could change Leila’s life, but it could help the next generation if we could get the funding. If someone wants to fundraise for Sparks, then please do it!”
For critically ill children like Leila, there’s no time to lose.
With your help, we can fund life-changing treatments that will help children in the UK like Leila who have rare and complex conditions.