Meet Dr Ming Lim

“Research holds the key to unlocking better treatments for children with rare conditions like dancing eye syndrome.” 

Dr Ming Lim is leading Sparks-funded research into dancing eye syndrome (DES), a rare disease affecting around one in 10 million children every year and for which there is no established treatment to ensure patients go into remission. 

The condition – also known as opsoclonus myoclonus syndrome (OMS) – causes unsteady muscle movements, a decrease in muscle tone leading to floppiness and a loss of balance, behavioural problems, sleep disturbance, and rapid, flickering eye movement.  

Dr Lim is a consultant and reader in paediatric neurology based at Evelina London Children’s Hospital. His main area of research is brain and spine inflammation. In 2018/19, Sparks started funding his research project to find out what causes OMS and how patients respond to treatment. 

“OMS is a very rare neurological syndrome, which can have a very debilitating impact on children,” says Dr Lim. “Like many other rare neurological syndromes, we’re not entirely sure what causes it, although we do know it is an autoimmune disorder, where the immune system attacks some part of the body, and in the case of OMS, it’s part of the brain.” 

Dr Lim's research

There are two main aspects to Dr Lim’s research. The first is to identify what causes OMS, which has already led to a promising discovery. “Some of the work we’ve done with a group in Oxford has potentially identified an antibody that is causing the problem in some of the patients with OMS,” says Dr Lim. “Once we identify the markers to find the cause, we need to know whether we can use it in all patients.”

The second aspect to the research is a European trial to discover more about how patients with OMS progress and the effects of treatment they receive. Dr Lim and his team are recruiting 100 patients to analyse their data and find out which groups are more likely to respond to treatment.

“Very few of the things we’re investigating now would be possible were it not for the involvement of patients and families,” says Dr Lim. “Not only do we hope that through research, we’ll find out more about the condition and how to treat it, but higher profile of the condition means that lots of patients and families are now aware of each other. They’ll continue to support each other, which is a very positive thing when they have so many unanswered questions about the future of their children.” 

Meet Leila

One of Dr Lim’s patients is three-year-old Leila, who stars in our No Time to Lose campaign film. Leila has OMS, and her diagnosis coincided with the discovery that she had a rare type of cancer called neuroblastoma. “Leila was initially treated at the Royal Marsden Hospital, where she was responding very well to therapy,” says Dr Lim. “However, she had a nasty relapse at the end of 2017 while on chemotherapy for her immune system. Doctors there asked for some advice, which is how I became involved.

“Leila is doing much better today and is back at home with her family, but we don’t know what the future holds for her. We’re optimistic that if we can get on top of Leila’s symptoms, we can give her a good future. Research holds the key to unlocking better treatments for children like Leila and that’s why fundraising towards research is so important.” 

Child health research is severely underfunded. Only five per cent of public and charitable research funding goes towards all paediatric research in the UK each year. 

For critically ill children like Leila, there’s no time to lose.   

With your help, we can fund research into life-changing treatments that will help children  in the UK like Leila who have  rare and complex conditions.  Donate now.