The Maxwell family has had a difficult history due to epilepsy. When John and Ann had their son, his first seizure followed when he was just four months old. The difficulties continued from that point on.
The boy is called Muir, and his eventual diagnosis revealed that he had a severe form of Myoclonic epilepsy. Muir has now reached the age of fifteen, and while his life is not uncomfortable, the epilepsy has brought him some communication and other developmental difficulties.
The family has taken things very public though, with Ann setting up a special charity that helps young people who have epilepsy. The Muir Maxwell Epilepsy Trust was first set up in 2003 and has since been wholly responsible for raising over £7 million.
The Center has now managed to create a brand new research unit as part of the work the charity does, and is already becoming known for groundbreaking work into the condition. Dr. Richard Chin runs the research centre, and the provision is fast becoming the number one such unit in the UK.
Edinburgh University approached the family and asked them to get involved in the new research provision, and Ann remembers: ‘One of the risks I suppose when we talk about a centre is that everybody thinks about it being a bricks and mortar centre and in the end it will take that form, because they intend to include the Muir Maxwell Epilepsy Centre at the new children’s hospital at Little France when it’s built.’
Dr. Chin makes the point that the success of the new institution is not really centered around the levels of research it does or the papers it produces. Instead he feels that the number of children’s views positively touched by the centre will be a clear indicator of how well it is doing.
He says: ‘The three main themes of the centre are related to the three primary questions that clinicians and patients are always faced with. The first is, what is the cause of epilepsy? Because in 70 per cent of cases we don’t know the cause.’
‘Second is, what is the best treatment? We’re addressing this in a general holistic sense, we’re talking about that quite loosely, not just drugs but early detection and intervention, particularly on learning and behavioral problems associated with epilepsy, because this is one area which is severely unrecognized and can be severely mismanaged. Lots of people think of epilepsy as just seizures and it’s far more than that. The learning and behavioral problems are largely ignored.’
‘The third is the psychological aspects of epilepsy – how does it affect the child, how does it affect the family, what are the financial, social and behavioral effects it has on them?’
Muir, the boy who inspired the project, has just turned 15, and currently boards at a special school called Donaldson’s School, which has excellent provision for speech and language.
Epilepsy affects millions of lives, and such work helps give hope to not just the sufferers, but their families too.
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