A CHARITY stalwart who has raised £8 million to support children with severe epilepsy after her child was diagnosed with the disease has been honoured by Prime Minister David Cameron.
Ann Maxwell’s charity Muir Maxwell Trust has grown to become a leading champion of people with complex epilepsy and bankrolled several vital support projects such as the UK’s first dedicated genetic service for the diagnosis of complex childhood epilepsies. It has also single-handedly ensured the distribution of more than 2700 epilepsy alarms – which allow parents peace-of-mind whilst their children are sleeping.
Launched in 2003, the charity aimed to plug the gaps in epilepsy support and followed the diagnosis of Ms Maxwell’s four-month-old son Muir six years earlier.
Most recently, the Trust teamed up with Edinburgh University College of Medicine and Veterinary Studies to establish the Muir Maxwell Epilepsy Centre, a collaborative research base focused on identifying causes, cures and quality of life issues in epilepsy.
For her work in filling all these vital gaps in family support, this week Ms Maxwell, from Dalkeith, was named the latest recipient of the Prime Minister’s Point of Light Award. The national award, which was founded as part of David Cameron’s Big Society campaign, recognises those individuals across the country that are making a positive change in their community.
For a parent hearing for the first time that their child has epilepsy, it can be very “frightening” because most children suffering from the condition are born healthy, she said. “Muir slept between us in our bed until he was five, just in case he were to have a serious seizure in his sleep,” she said.
“With Muir it developed quite quickly, and it was something we had no experience with – so we had no idea what we were meant to do.”
Ms Maxwell and her husband Jonny struggled to find adequate support for Muir, who had developed a particularly rare and complex form of epilepsy called Dravet syndrome.
The condition affects just one in 500 children with epilepsy, and can result in death due to prolonged seizures lasting longer than half an hour.
With no experience of running a charity, Ms Maxwell spearheaded the trust from her living room for the first four years.
“The charity really developed around our experiences with Muir, which is why we named it the Muir Maxwell Trust,” she said.
“The projects we took on centred around gaps in support that we faced ourselves.
Speaking about Ms Maxwell, Mr Cameron said: “Ann has done an incredible job creating and growing an organisation to give children who suffer from epilepsy and their families the support and care they need.”