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Charity to close after raising millions to tackle childhood epilepsy

PA News

A childhood epilepsy charity that has raised millions of pounds is to cease work.

The team at the helm of the Muir Maxwell Trust decided to retire, having been founded in 2003 by Ann and Jonny Maxwell after their son Muir was diagnosed with a severe form of the condition.

It employs two members of staff, one full-time and one part-time, and has raised cash to improved diagnosis, treatment and understanding of complex childhood epilepsy.

Muir Maxwell now lives at the David Lewis Centre in Cheshire (Muir Maxwell Trust/PA)
Muir Maxwell now lives at the David Lewis Centre in Cheshire (Muir Maxwell Trust/PA)

In recent years, Ms Maxwell has had to take time out from her volunteer fundraising role for brain surgery and proton beam therapy.

She said: “It has been an honour and a privilege to work with so many eminent physicians, committed supporters, businesses and indeed celebrities, too.

“We leave the stage immensely proud of our contribution and especially our partnership with Edinburgh University, which will be the continuing legacy of the work of the Muir Maxwell Trust.”

The couple live in Edinburgh and are parents to Connor, 26, Muir, 23 and Rory, 21.

Muir has Dravet Syndrome, a severe form of epilepsy that is resistant to treatment.

He was not expected to survive his second decade when he was aged five.

Muir is now 23 years old and lives full-time at the David Lewis Centre in Cheshire, a residential centre caring for 90 adults with complex epilepsy.

Ms Maxwell added: “Although I am sad that the time has come to wind up the trust, I am proud of all that we have achieved and the legacy we leave behind in Muir’s name.

“The work of the trust has always followed the experience of raising Muir but that journey has changed now from a journey through childhood epilepsy to one focused on living as fulfilled a life as possible in adulthood.”

Shona Campbell at MHA Henderson Loggie has been appointed to wind up the charity.

Lesslie Young, Epilepsy Scotland chief executive, said: “The commitment and passion displayed by Ann Maxwell and her family over the past 17 years has been unwavering and they are leaving the epilepsy community in Scotland in a significantly better place as a result.

“Epilepsy Scotland thanks the trust for its considerable efforts and will look to continue aspects of this important work in improving the care of people affected by epilepsy and their families in the years to come.”

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