Aimee's sibling story

Alongside her brother Jamie, Aimee has been supported by Demelza since they were both small children.

Aimee says: “We’ve been supported by Demelza for 14 years, since my brother Jamie was seven, so a long time! They’ve helped me and my family so much. Over the years, Jamie has come to Demelza for respite, and we’ve had family stays as well, which are so fun. You can do anything you want – it was literally like having our own playground.”

Growing up with a sibling with complex needs wasn’t always easy, but Aimee has found community and support through Demelza.

Aimee says: “Jamie is my big brother, and he was diagnosed at just three years old with multiple genetic conditions, including Hypomelanosis of Ito, which causes seizures. Jamie is also registered deafblind and has autism.

“I didn’t really understand what was going on with Jamie when I was little. I remember watching Children in Need and asking my mum: “Is Jamie going to die?” She didn’t really know what to say – she tried to explain it to me in a way that didn’t scare me but deep down I knew that that could happen. But I wouldn’t change him for the world.

“We’ve experienced things that no kid should have to go through but we’ve also experienced things that are so fun - we had a Make a Wish trip to Florida, we’ve been to Disneyland Paris with Demelza - we’ve done things that a lot of kids wouldn’t normally get to do, so that’s been amazing.

“It does have its downsides. It’s tough at times, but you just get on with it. There’s always someone to talk to at Demelza though, if you need therapy or counselling, you can do art therapy, music therapy, there’s always someone to help, so that’s really nice. You also get to meet other families, so you know you’re not on your own – everyone is so different but we’re all going through same things. It’s really nice to meet new people and learn about their children and siblings. It just gives you that sense of family, that at the end of the day we’re all there for each other. The community and friendship is really lovely.”

When Aimee need additional support, Demelza was there to help her express her feelings and find a way through.

Aimee says: “I had art therapy when I was younger – my art therapist would take me out for the day and it really helped, just having that neutral space to talk to someone, letting me say whatever I want, no matter what it is. I got to use everything, pastels, paint, clay. I definitely found it easier than talking sometimes. The colours you use can show how you’re feeling, so at the start I was using very dark colours, where I was quite confused and upset, but then towards the end I was using brighter, lighter colours, where I had talked things through – it’s really interesting!”

Even though Jamie is now an adult, Demelza are still supporting him and their whole family.

Aimee says: “Jamie is 22 now, so he can’t access some of the children’s services, but we still get support through the transition service – we go to transition events and we still all get support as a family. Paul and Claire, who run the transition service, are amazing, they do all sorts of activities for Jamie and the other young people - gaming, swimming in the hydro pool, art sessions, it’s great.

“Moving between child and adult services was crazy – at one point Jamie had about 27 different doctors! When he hit 18 he was discharged from the child services, and we didn’t know who to contact for the adult services. It’s been a long two or three years of trying to figure out who to contact, getting the right referrals etc, but everyone at Demelza has been absolutely amazing, they’ve really helped with that. Demelza feels like a second home. We’ve met so many families, and made friends for life.”