Lewis’s Story

Aged 14, Lewis is thriving. But life didn’t start out this way.

At birth, doctors had to resuscitate him, and his parents were told not to expect him to survive. He now lives with hydrocephalus, cerebral palsy, global development delay, epilepsy and autism. He’s also doubly incontinent and responds to things in a physical way. Sara, his mum, explains: “One of the most difficult aspects of his disabilities is his temperament.

“I’ve got scars, scratches and bite marks all over my body. The thing is he doesn’t know it’s you he’s hurting, and he doesn’t understand. It’s just a question of protecting yourself as best you can when it happens."

After initially saying he wouldn’t survive, doctors then said if he did, would never be able to walk, talk or do anything for himself. Despite this, Lewis has been able to do more than they ever thought was possible.

Sara says: “Now he’s a boy who runs around and can talk the hind legs off a donkey. He feeds himself quite happily and loves playing on his games console. Lewis also loves anything that involves mixing and messing and he loves art. All our friends have a canvas that Lewis has made. It’s such an easy Christmas present from us.”

Lewis attends Action for Children’s activities at Bury Cycle Racetrack every Friday. There, he can use an adapted bicycle - which he powers with his arms - or try baking, bowling, archery arts and crafts. He also learns life skills by being supported to travel on the tram into town where he might go to the cinema.

“Unlike other children, he can’t access mainstream things because he can’t cope with the noise and all the other people. There’s are other autistic groups locally but because of Lewis’s other conditions, it doesn’t work,” Sara explains. “So, when we found out about Action for Children, it really became a lifeline for us. I would have gone under without it. It’s a place for him to be a child.”

“They take him out to the park or once they went to Gulliver’s World which is somewhere I could never take him on my own. They’re always doing something,” Sara tells us. “He struggles with friendships because he spent so long in hospital with just adults for company but he’s starting to play with one or two others it just has to be when he’s ready and on his terms."

As well as giving her a well-deserved break, Sara tells us “I’ve also made friends there. We’re not round each other all the time because our lives don’t allow for that, but we contact each other.

“It makes you feel normal because you’re not the only person in the world that’s going through this. It makes you feel like you are actually doing a good job rather than being judged. In other settings you can see that people are thinking that he needs more discipline or that he’s a naughty kid, but it’s not his fault.”

Since lockdown the first lockdown in March 2020, Lewis has been struggling. Sara explains: “We have all worked really hard with face masks as he is frightened of any masks, but with a great deal of support and the use of the sunflower lanyard I’m able to get him out a little. He just needs reminding it is me under the mask. Action for Children were brilliant with helping with this."

"He managed a Teams chat recently as he was really missing one member of staff and it was so good to see the two of them talking. It didn’t last long before he ended the call, but it made him very happy.

"We’ve had some struggles with his behaviour and can be unpredictable, but Action for Children have supported us so much."