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UK: heart transplant refusal: "Girl, 13, standing by on refusal"

"A terminally ill girl who won the right to refuse a heart transplant says she is confident she made the right decision not to be operated on again.

Hannah Jones, 13, of Marden, near Hereford, has been to Disneyworld in Florida and met Prince Charles since she refused further operations in 2008.

She said she had more energy thanks to new medication for a hole in her heart and was now able to attend school more.

Hannah is writing a book about her life and had no regrets.

She was diagnosed with leukaemia and her heart has been weakened by medication she has been required to take since the age of five."

"Really well"

"Hannah has been helped by her mother and a ghost writer to tell her life story.

She said: 'It's going quite well actually. Occasionally we have differences of opinion about how I felt at a particular point in my life but we work it all out and put it down on the laptop and we get on really well.'

She said she had started taking a new vitamin supplement which she said had given her more energy in the past few months.

The pupil at St Mary's High School, in Lugwardine, added: 'I notice a lot more and I'm able to do a lot more.'

'I went to Cornwall, I'm going to London again soon. I've done a lot since I started this tablet.'"

"No regrets"

"Despite a temporary respite from constant hospital visits and pain Hannah said she stood by her earlier decision to refuse a heart transplant.

She said: 'I wouldn't change anything. If the tablet is working that's fine I will keep taking it, I don't regret my decision. It's still something I will stick with for a while and see how it goes but at the moment this decision is the right one for me, it may not be for anybody else but for me it is.'

Dr Tony Calland, chairman of the British Medical Association's ethics committee, said someone of Hannah's age was able to make an informed decision to refuse treatment.

He said this view was supported by a decision in the House of Lords in the 1980s that ruled a child who understood the issues and consequences could be considered legally competent.

Health workers at Herefordshire Primary Care Trust said they accepted Hannah's decision but advised that she retained the right to change her mind at any stage and all professionals supporting Hannah and her family should be sensitive to that right."


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