Evelina London Zip
Dr Ming Lim – the doctor who inspired the Evelina Zip
Dr Ming Lim runs the specialist brain and spine inflammation unit at Evelina London which looks after children with very rare conditions, including nine-year-old Zaki Roe, whose father Andy instigated the Evelina Zip event.
Dr Lim talks here about Zaki’s condition, his pioneering research, what a specialist clinical research facility (CRF) would mean for Evelina London – and why he stepped up to take a test ride on the Evelina Zip!
Life-threatening brain inflammation
‘Zaki’s condition is called idiopathic intracranial hypertension, where pressure in the brain builds up. It causes pressure at the back of the eyes which gives you vision failure and extreme headaches. In Zaki’s case this was brought on after an episode of life-threatening brain inflammation called encephalitis. We think an inherent narrowing of one of the vessels in his brain, a venous sinus stenosis, also contributed to this build-up in pressure.
‘He has been reviewed by a specialist team in Cambridge, the only team in the UK to carry out a highly technical and dangerous procedure to insert a ‘stent’ to reduce the narrowing.
‘The good news is that although the pressure on his brain is elevated, Zaki’s eyesight has never been affected. So our hope, a decision taken in conjunction with the team in Cambridge, is that Zaki’s brain growth will increase the calibre of the vessels and in time the pressure in his brain will normalise.‘
Dr Lim’s research and space age technology
‘As part of my research, we have evaluated ways of monitoring brain pressure non-invasively. For example, we collaborated with a group in Southampton who are developing a kit that astronauts can also use in space. We use a version of this on the neurology ward. It looks like a pair of headphones (very expensive ones!) whereby a sound wave is used to trigger a natural reflex in the ear which is then detected by a sophisticated membrane.
‘I look after two other big groups of children; one group of patients who have brain inflammation (including multiple sclerosis), and another group with spine inflammation. That’s who we do most of the research on. As little is known about a lot of these conditions, we collect a number of these children and learn about patterns of how they present, respond to treatment and improve with time.
‘Equipped with this important information, we can then plan clinical studies to test different treatments to improve the outcome of these children. Our department at the Evelina London forms part of a UK network of specialist centres, the UK Childhood Inflammatory Disorders Group, that work closely to improve the care of these children.’
Why a dedicated CRF is important
‘Having a facility that is ring-fenced for a lot of these research activities will be crucial. At the moment we’re using an acute clinical facility whereby supply is already outstripping demand and that isn’t good for clinical trials.
‘But we also need a CRF if we are to step up a gear in terms of doing more cutting-edge research. A CRF would be a game changer for a lot of us.
‘It would also benefit other areas within children’s neurosciences such as muscle disease, epilepsy, stroke and developmental neurology research. Excellence already exists within Evelina London. Neonatologist Professor David Edwards and his team run cutting-edge intervention trials within the neonatal unit already.
‘So by us all being able to work collaboratively in the CRF and with leadership from such active research teams, we would be able to raise the bar of research across the hospital.’
Helping Zaki and his family
‘I met Zaki within about six months of him falling ill and his condition has improved greatly since we first met him. What we have done for Zaki is manage his high brain pressure in the safest possible way.
'We have also helped the family understand the condition better – that’s important in patient management.
‘Zaki’s treatment reflects how the whole team and hospital have worked together, ranging from his numerous lumbar punctures and imaging, through to his many follow-up appointments.’
Test ride on the Evelina Zip
‘It was Andy’s initial idea to do the zip trip – six months later it’s reality and I went down the zip wire on the test run. It was one of the craziest things I’ve done, but Zaki was expecting one of his doctors to take the Superman route!
‘It was great watching the 20 fundraisers go down the zip on 2 December. The Evelina Zip also showcased how dogged determination from someone with a vision like Andy can make a big change to the care of our children.’