When Hope was a year old, she was diagnosed with severe asthma, severe angioedema which is a condition that can swell her body parts up to double the size. She also has Inflammatory Bowel Disease, seizures and coeliac disease – all of which result in equally unpleasant symptoms and she often ends up in hospital… she’s been admitted over 200 times she adds. With complications which means she has a nebulizer four times a day, is on 22 different medications daily and has physiotherapy four times a day.
This is her story.
I’ve always had this condition, I have to take lots of medications and be on a nebulizer four times a day, sometimes it’s a struggle. I’ve lost friends along the way because I couldn’t go out with them but the friends I have now help me – they remind me to take my medication or they visit me in the hospital.
Amanda, a Rainbow Trust Family Support Worker, supports me and my family. She visits me in hospital and we have funny conversations, or she does arts and crafts with me. If I’m too tired to do that, we chat – Amanda makes it fun, she’s good company that isn’t my mum!
Sometimes having a serious condition really sucks and it’s draining but I’m so used to it now. If I can’t do something that my friends want to do, they say, we can do something another day.
If there was one thing I could change, I wish the world would be more accepting and more understanding of individual illnesses.
I’m in sixth form now and I want to work with children and be a teacher. For those teenagers who have a serious illness and don’t have a Rainbow Trust Family Support Worker, get help, trust me, they are extremely good.
Here Sharon, Hope’s mum, shares how Rainbow Trust supports her and her family.
We’ve had Rainbow Trust’s support for five years and it’s a godsend, a lifeline for us. The emotional support is invaluable as well as the physical support with hospital appointments. There is often so much information to take in at Hope’s appointments that it’s great to have someone else there to listen and hear what the doctors are telling me. Some days we have such long waits in the hospital and Amanda stays with us which is truly a godsend. Some days we can be in for 10 hours so having the company makes a real difference.
Mandy also supports the rest of my family when Hope and I are in hospital. It’s a constant worry for them – will Hope be okay, how long with she be in for etc? Jim, my husband, has to consider taking time off work if Hope is in hospital for any length of time to take care of Hope’s siblings. Our two sons have learning difficulties and autism so worry more about their big sister as they don’t always fully understand what is going on. Mandy would sit with Hope at the hospital, so I could go home to see my sons – they still need me, and I wanted to be there for them. When I am in hospital with Hope, Elise, my 11-year-old daughter, has to step into the role of a young carer to help Jim with the boys, which is really hard for her – she’s only 11. Mandy takes Elise out for play dates and chat times so that she can be the 11-year-old little girl that’s he should be.
Without Rainbow Trust and Mandy, life would be so much more stressful. We can only rely on family and friends for some things but having someone who’s outside of the family who understands, someone I can offload to is so good for me. Even just being able to pick up the phone to someone who understands is a help.
It’s got harder to care for Hope as she has got older – she’s 16 now and has her own life. Handing over her care to her has been hard, I have to trust that she will remember everything she needs. She’s very capable and I can trust her but I’m still her mum and will always worry.