Muir Maxwell has had severe epilepsy since he was a baby and, at 23, is unaware of how his experiences have changed the lives of many children like him. But here, his mum, Ann, explains how a Trust, inspired by Muir, has funded vital epilepsy services and still, today, makes possible some of our groundbreaking genomic research at the Epilepsy Society.
Ann Maxwell describes her son, Muir, as the happiest and healthiest she has ever seen him. “Of course I have dark moments in the middle of the night, when I lie awake and think ‘oh no, it is six months since we have been able to hug him and kiss him and really be with him.’
“But in a strange way, this pandemic has enabled Muir to fly the nest just as his brothers, Connor and Rory, have done. He is living and settled in adult social care and I think, for the first time, he is going to start thinking of that, as opposed to us, as his home.”
Muir Maxwell is 23 and has Dravet syndrome, a severe form of epilepsy. He had his first seizure at four months old and since then, family life has been a revolving door of ambulances, status epilepticus and the myriad challenges that accompany a life dominated by seizures.
But there is a certain poetry in Muir’s newfound independence at the David Lewis Centre in Cheshire. Letting go and moving on is very familiar territory this year for Ann and her family. For the last two decades, Muir has been the inspiration and driving force behind the Muir Maxwell Trust (MMT), a charity set up to support the needs of children and young people with epilepsy and associated disabilities.
MMT has followed the experiences of raising Muir. “Where we found that services were lacking, we fundraised and provided these services and then established a partner fund to ensure that the service continued and was sustainable.”
But this year, Ann and her husband Jonny, decided the time was right to wind the charity up: to step back from what has been their life’s work for almost 20 years. In 2014, in an article published in Wiley Online, Ann wrote: “They say that an effective charity will eventually make itself redundant. In our dreams, that would be our aim.”
Today, Ann says that is where they are, “not in whole, but in part.”
“I would have liked to have been able to fix epilepsy for Muir and others, but I can’t. One has to recognise one’s own limitations. But when I look at the projects we have supported, the initiatives we have created and the contribution we have made to the lives of families affected by epilepsy, I think the Trust has a huge and wonderful legacy, and it is right to go out on a high.
“We have been able to quietly change lives, and that is all down to Muir. Every step of our journey has been the result of following Muir’s lead. The world would be a different place for so many people without him and when we look at his legacy, we are absolutely bursting with pride.”
"We set the ball rolling"
The impact that Muir and the MMT have had on epilepsy is immeasurable. The Maxwells stopped counting the amount of money they had raised when they hit the £10m mark. And having initiated so many projects which now have a life of their own, they modestly stand back and say “we set the ball rolling.”
Their journey began when sleepless nights were a way of life for Ann and Jonny as they were on permanent alert in case Muir had a seizure in his sleep as a small boy. Driven by the need to have peace of mind at night time, they began distributing potentially life-saving epilepsy alarms to thousands of families across the UK.
In response to the many needs of Muir, who has severe learning challenges including speech and language disabilities, they have gone on to provide an eclectic raft of world class, state-of-the-art epilepsy services under the MMT banner.
These include an epilepsy centre at Edinburgh University, a wing named after the Trust at the Young Epilepsy Neville Medical Centre, and the UK’s first genetic diagnostic service for childhood epilepsy in Glasgow. They have also made a significant contribution to a video telemetry service at Great Ormond Street Hospital and to the introduction of portable telemetry units to enable children to undergo EEGs at home.
Research at Epilepsy Society
The Trust has also been supporting research at the Epilepsy Society since 2016. And their legacy continues for another year through the pioneering work of our Muir Maxwell Research Fellow, Dr Simona Balestrini, who is investigating the genomics of complex epilepsy and how treatment can be personalized for the individual.
Dr Balestrini’s research includes a suite of innovative techniques such as 3D images which map the face in order to establish whether genetic changes that cause epilepsy also cause subtle changes in facial shape and asymmetry.
She is also using Transcranial Magnetic Stimulation combined with EEG (TMS-EEG) to understand the link between genetic changes and alterations in brain activity, including how a person responds to treatment.
Her ultimate goal would be to see genetic testing established as a regular part of clinical practice in epilepsy, just as MRI, EEG and blood tests are today. The charity already runs monthly genomics clinics with a multi-disciplinary team of geneticists, genomic and clinical scientists, and neurologists. The hope is that this practice will one day be replicated across the UK.
Ann attributes much of Muir’s renewed vigour for life, to the care he has received at the Epilepsy Society. Through the Epilepsy Research Centre at Edinburgh University, the Trust played a key part in the arrival of the first NHS approved cannabidiol (CBD) treatment for children with complex epilepsy – Epidyolex. Muir was not involved in the trials as the Maxwells wanted to wait until he reached adulthood before trying the new drug.
Now, under the supervision of his neurologist at the Epilepsy Society, he is one of 30 patients on a compassionate programme for Epidyolex, and Ann says the changes in him were instantaneous.
“We literally saw the benefits within 24 hours,” she says. “It wasn’t so much about his seizure control but about his quality of life. Muir was a young man who was struggling with his epilepsy, having to take time out during the day to sleep because of his seizures. Overnight he transformed into someone who was jumping out of bed at 8am with a really tangible joy and energy for life.
“He has had a rough ride with his seizures and I would not say that the medication is the holy grail. But it has changed him as a young man – it has had a really positive impact on his cognitive abilities and mood. The CBD has let loose his vibrant personality which seems to overcome the limitations of his language.
“He is busy and creative and is always outdoors, jumping in puddles and feeding the animals. He is all smiles, laughter and humour. We are immensely proud of him.”
Early in Muir’s childhood, Ann admits that she would find herself mourning the loss of the child she never had. But not anymore. “We very much celebrate the young man Muir has grown into and all that he has achieved.
To Touch An Angel's Wings
“Of course if I could give him a normal life, I would do so in the blink of an eye, but I wonder whether we would have been lesser people without Muir. We have learned so much from him. When you have good health and the jigsaw fits into place, it is easy to take life for granted.
“But I think Muir has made us far more compassionate people and far more aware of the needs of others. I am writing a book about his story - ‘To Touch An Angel’s Wings’. That is our life with Muir. Through all his seizures and his challenges, he has been the inspiration for the Muir Maxwell Trust, and he has changed lives.”
And for the future? Although the Trust is no more, Ann says her focus now will be on campaigning for better adult social care for young people like Muir.
“Muir’s care is excellent and the staff are incredible. But there just aren’t enough services for everyone. And there should be.”
Epilepsy is not just one condition, but a group of many different 'epilepsies' with one thing in common: a tendency to have seizures that start in the brain.
Did you know that the Greek philosopher Hippocrates (460-377 BC) was the first person to think that epilepsy starts in the brain? Find out more interesting facts and debunked myths around epilepsy and seizures.
There are many different types of epileptic seizure. Any of us could potentially have a single epileptic seizure at some point in our lives. This is not the same as having epilepsy, which is a tendency to have seizures that start in the brain.