Boy and mother cuddling on sofa

Lewis MacDougall: Mum's MS helped me empathise with my character in A Monster Calls

Lewis MacDougall, 14, won praise for his portrayal of a young boy losing his mum to cancer in film A Monster Calls. He tells us about life with his mum, who had MS and died when he was just 11.

Mum was very active when she was young. She was in musicals, she danced, she played piano. She was a really fun person to be around. My dad isn’t arty, so I guess I must have got my love of acting from my mum. Dad says I got all mum’s good bits!

How MS affected mum

Mum was diagnosed with MS when she was around 30. I was born when was she was in her early 40s. Before I was born, her walking was getting worse. She could walk a bit, but she also used a wheelchair.

Up until I was about 4 or 5, mum could still get out and about. When I was about 7, her MS got quite bad. Her vision got worse, she couldn’t really see. And then she lost her speech. She was severely affected by the end.

Life with MS in the family

I don’t remember a moment when I found out about mum’s MS. I was always aware of it. There were times I had questions – I’d look at my friends’ parents and wonder why my mum was the only one in a wheelchair. But dad was always honest with me. And I know it’s funny to say, but in a way, I was proud of mum’s MS – it was what made her different.

We used to enjoy holidays and days out as a family. Mum couldn’t fly, but we’d go to places in the UK. We went to York and we visited family in Oban. We enjoyed things any family would.

When mum’s MS got worse, she had nurses visit every day. I was too small to help out really. But my dad says what I did was understand. Like if we were going out, I understood that mum would need to be helped into the car first. I was very patient – I never nagged.

Understanding my character in A Monster Calls

My experiences helped me have empathy with Conor, my character in A Monster Calls. I started work on the film about nine months after mum died. It gave me the opportunity to get emotional. I think it’s good to have a cry sometimes.

The main difference between me and Connor was that I knew what was happening to mum. Mum got progressively worse, and there were times when she was very ill and the doctors said she wouldn’t survive. My dad always told me the truth about that. So unlike for Connor, mum dying wasn’t a shock, although I was still very upset.

Mum got to see me in things like my nursery nativity play, but she didn’t get to see the films I’ve done. I would have loved for mum to see me perform. I hope she would have been really proud of what I’m doing.