(image of Muir and David Lewis support worker Jan Stubbs)

Muir joined us at David Lewis in 2019. He lives in ‘Chimneys’ at our Warford site. His mum Ann shares their experiences as a family.

“I realised parenting Muir wouldn’t be the same as parenting his brothers when he was still in nursery school.” Ann tells us, “I vividly remember the Head Teacher taking me aside one day and suggesting that our chosen school wasn’t the best place for him. It was the start of a journey I didn’t know we were on.”

Muir had his first seizure at four months old and many more in subsequent years. He was diagnosed with Dravet Syndrome, aged 5, a rare and devastating form of epilepsy. Family life became a revolving door of ambulances and hospital admissions. 

Ann shares how challenging it was for them: “My husband often worked away from home and I had three young children, one with significant medical and special needs. We managed for a number of years, but by the age of 12, Muir became a school time boarder at Donaldson’s College, a school, that at that time specialised in speech and language therapies. It was a hugely emotional moment for us but it was absolutely right for Muir and we visited every Wednesday evening.

“His placement ended when Muir was 18. It was a difficult time for us as a family and especially hard for Muir. He stayed at home with us for a year, before eventually transitioning happily to St Pier’s College at Young Epilepsy and was very settled there for three years.”

Inspired by the experience of raising Muir, the family have had a significant impact on the lives of others with epilepsy through their charity the Muir Maxwell Trust. Over a period of 17 years the Trust raised millions for epilepsy care and research. 

In 2019, Ann was diagnosed with a brain tumour which prompted the family to consider Muir’s longer term future. 

“We began to look at adult social care services around the Country. The experience was dispiriting,” she continues, “By the time we arrived at David Lewis on a freezing cold January morning, we agreed it would have to be a game changer in order to put a smile back on our faces!”

Thankfully the visit was transformative. 

“At the meeting  it was clear the staff had thoroughly considered the detail of our application and knew how best to support Muir. On a tour of the site we met llamas and emus and were transfixed by the sense of space. Despite the grey January day it felt like a rural oasis and perfect for Muir, who is in every way, nature’s child.”

Muir joined David Lewis just prior to the pandemic, aged 22. Ann tells us how, despite the stresses of that time, they knew he was in the right place.

“We thought very hard about whether to bring him home but were ultimately thankful we didn’t,” Ann says. “He settled in and spent the summer of 2020 outdoors. Whatever the weather, Muir absolutely loves being outside. Staff affectionately associate Muir with his love of flora and fauna and he is often seen pulling his red trolley around David Lewis, brimming with the flotsam and jetsam he has collected!

“Living in the community was never an option for Muir. David Lewis is perfect, both his home and his haven. Muir is incredibly settled. On our visits we sense the warmth from his superb care team. I’ve visited a number of adult social care provisions so I feel confident enough to say that there is nowhere like David Lewis to be found anywhere else.”