Genome Research Project Now in our fourth year of supporting Muir Maxwell Trust Clinical fellow Dr Simona Balestrini - please click here for further information. Close notice
Bg Top Edge Bg Bottom Edge
Home > The Trust > Our Story

Our Story

Muir had his first seizure at the age of just four months. Now 23 years old, he has had every kind of seizure there is, some life-threatening and lasting for several days, resulting in a diagnosis of severe myoclonic epilepsy or Dravet Syndrome

Though now improving, Muir’s speech is limited and he has a developmental age of three after going undiagnosed and therefore without appropriate treatment for his condition for many years.

The family know that Muir’s condition may lead to a shortened lifespan but the confirmed diagnosis of his form of epilepsy and the recent introduction of a new drug regime means that Muir’s concentration span and communication skills are radically improved. "He’s started interacting with us a lot more," says Muir’s older brother, Connor. "He’s a completely different person."

"He’s a very robust young man with a wonderful joy for life," says Muir’s mum, Ann. "I think together with his family, the support that we’ve given him and are giving him, and also the support that I know his brothers will give him in the future as they grow up I see no reason why Muir shouldn’t go from strength to strength within his own life."

From the beginning, Ann and Jonny have been able to drive the charity forward with a unique passion. It is the Maxwell’s personal experience that has inspired them to help families throughout the UK living with this often life-threatening condition.

"As the parents of a 21-year-old boy who developed epilepsy in infancy, we have struggled with our son Muir throughout his life, panicking at the challenge of managing every seizure, despairing when they proved unmanageable and agonising over decisions relating to treatment and medication as the extent of his brain damage emerged. It has made us resourceful, leaving no stone unturned. We know where the help is required and where the resource is weak. We want to share what we know and we are committed to changing things both now and in the long term for children like Muir and their families."