Meet Amy (11). Amy has cystic fibrosis (CF), so the children’s hospital and ECHC have been a big part of her life, beginning with a lengthy 40 night stay when she was born.
Mum Laura, says: “CF is physically very hard on Amy. She is often out of breath and suffers from related conditions – diabetes, asthma and possible arthritis. She takes a lot of tablets, insulin injections and does breathing treatments every day. It’s a very gruelling schedule which there is no getting away from.
“Emotionally, it’s also very difficult. Although she doesn’t dislike coming to hospital, there are things that her stays stop her from doing. She missed the last day of the school term as she was unwell, which includes a full school water fight. Her CF team knew how important this was to her, so they took part in a water fight in the hospital with her, which was so lovely and really made her day!
Laura, Amy's mum
“Amy is a very tough girl, but sometimes she can get very frustrated that she is ‘different’. She often asks if she will live to have a husband, kids, etc and I tell her of course she will, but the future is never certain.
“She is aware that she may need a lung transplant one day, and knows that people do sadly die from CF.
“During Amy’s hospital stays, we often go down to ECHC’s Hub to get a break from the ward. She loves everything arty and creative, and there’s always lots of arts and crafts going on there. The ECHC team at The Hub are fabulous – always so friendly and they have so much time for everyone.
“Amy now asks to go down every time she’s in hospital. As a parent, I also appreciate chatting with the team, and being able to offload. It gives you a chance to forget how serious things are, for a little while.
“She loves it when the team come round the wards with activities or visitors. Thanks to the charity, she has painted Christmas trees, had a video call with Santa, attended movie nights, watched a pantomime and much more.
“One of her highlights of last year was meeting the players from Hearts FC, her favourite football team.
“Advances in treatments are being made all the time, and Amy is currently on a ‘wonder drug’ which some CF patients have amazing results from, so we have hope.
“For now, it’s great to know that we can always rely on the wonderful RHCYP teams and ECHC to make Amy’s hospital stays as positive as possible.”
Whether it’s music, magic or messy play, we run a programme of activities to bring entertainment and distraction to hospital days and to make long stays better. Click below to find out more.