Supporting Terminally Ill Children

When Hope was a year old she was diagnosed with severe asthma, severe angioedema, inflammatory bowel disease, seizures and coeliac disease, all conditions with the most unpleasant symptoms and which have resulted in over 200 hospital admissions, physiotherapy four times a day and 22 daily medications.

As Hope admits, life has been a struggle, restricted as she has been by her condition. Friendships have been hard to maintain when she’s been unable to get out and about and coping with a world that is not always accepting or understanding of illness has been a challenge for her.

Help for Hope and her family came in the form of a Rainbow Trust Family Support Worker, Amanda, who for the past five years has supported the whole family through some very difficult times. Visiting Hope in hospital or at home, she does arts and crafts with her or just chats. As Hope says, “Amanda makes it fun, she’s good company that isn’t my mum!” Now in the sixth form, Hope has made some good friends and wants to work with children and be a teacher.

For Sharon, Hope’s mum, the Rainbow Trust has been a lifeline, supporting the family both emotionally and practically, the latter especially with hospital appointments. With so much information to take in, having someone else there to listen and hear what the doctors are saying is invaluable. Just having Amanda to keep them company makes the sometimes very long waits at the hospital more bearable for Hope and Sharon.

For the rest of the family, Jim, Sharon’s husband, and Hope’s three siblings, Elise, and two brothers, both of whom have autism and learning difficulties, the support from the Rainbow Trust is vital. Sometimes Amanda will sit with Hope in hospital so Sharon can be at home with the boys and so Jim doesn’t have to take time off work. At other times Amanda takes Elise, 11, out for playdates or just to talk, giving her some respite from her role as a young carer.

For families like Hope’s, the Rainbow Trust has provided some desperately needed support. Thousands of other families with a very sick child also need that support. Funding for more Family Support Workers could bring help to them as well.