Hannah Jones

Posted November 13th, 2008 by Jane

I feel really moved by the story of Hannah Jones, age 13, who has just asserted her right not to have a heart transplant. Hannah has been ill since she was 5, first with leukemia and then with serious heart problems, caused by one of of the drugs she had taken to zap an infection. For a while it seemed that over hasty child protection officers were to seek a high court order to take Hannah away from home because her parents were allegedly preventing her treatment.

Hannah is clearly a wise and articulate young woman, whose experience of illness has given her a maturity beyond her years, beyond the understanding too of adults who have not undergone lenghty invasive treatments. Much of the media debate about her youth, about her capacity to take this crucial decision has been senstively presented and makes a refeshing change from some debates about children which appear to systemtically infantilise them.

Beyond considerations about the appropriate age at which young people may be able to take their own decisions about medical treatment what strikes a chord with me, irrespective of Hannah’s age, is her clear decision that would she would rather live as well as she can in the remaining time she has, rather than risk the pain, distress and potentail failure of another high tech intervention.

I’m not in a good emotional place right now…in my adult breast cancer world. I feel quite alone. I don’t know whether I read them wrongly but it seems to me that in the on line forums of cancer world the dominant discourse is of fighting battles, of submitting to endlessly more treatment, no matter what the odds or the side effects. So for me it’s good to read another kind of story about an intelligent young woman saying ‘No’ to more trauma, more hopsital visits,more indignities.

Hannah Jones is well right now and wants to stay well enough to do the things she wants to do. How much I idnetify with that. I hope Hannah gets many more months of doing just that.

And me? Well the decisions about what next, about living with illness, about weighing up treatment against no treatment..won’t be made quickly or easily…but knowing that someone so young has made her own right decision might help me a bit.