If you’re feeling sorry for yourself – think of Hannah

I’m humbled to read of the courage and steadfastness of a 13-year-old girl facing death in England.

Hannah has a hole in her heart, a side-effect of treatment for leukaemia.

But with the loving support of her parents, Andrew and Kirsty, she has made the momentous decision that she wants to spend the rest of her time at her home in Marden, near Hereford.

She is so weak she can manage only a few breathless sentences, but she said: ‘I’m not a normal 13-year-old. I’m a very deep thinker. I’ve had to be, with my illness. It’s hard to know I’m going to die, but I also know what’s best for me.

‘Being in hospital reminds me of bad times. I’ve spent long enough there. I just want to be home – even if my life might be shorter.’

With its High School Musical poster on the wall, pink laptop on the desk and dolls’ house in the corner, Hannah Jones’s is a typical little girl’s bedroom.

But, as she snuggles up on her four-poster bed to leaf through a brochure for Walt Disney World in Florida, it rapidly becomes clear that there is nothing typical about Hannah.

The 13-year-old has just succeeded in a High Court case to win the right to refuse a heart transplant which could save her life.

And, instead of being in hospital, waiting for an operation, Hannah – with the support of her parents Kirsty, an intensive care nurse, and Andrew, an auditor – is excitedly planning a trip to Walt Disney World in what may well be the closing chapter of her life.

Hannah’s decision has provoked debate, not least because her parents have agreed to respect their daughter’s wishes.

The result was that in March this year Hereford Hospital, where Hannah has been treated, started High Court proceedings temporarily to remove her from her parents’ custody to allow the transplant – accusing Kirsty and Andrew of ‘preventing’ their daughter’s treatment and threatening to send police officers to forcibly remove Hannah from her home.

It was only when Hannah convinced a child protection officer that she knew her own mind, that proceedings were finally dropped.

Today, fragile Hannah and her parents are back at their home in Hereford.

Since Hannah won the right to refuse her operation, they are taking each day as it comes. She is exceptionally weak, and can manage only a few, breathless sentences.

. . .

‘I know many people will think that we should force Hannah to have the heart transplant operation,’ says Hannah’s mother, Kirsty.

‘Especially as it, at least, offers the chance to prolong her life. But, until you have walked 24-hours-a-day, seven-days-a-week, in my shoes, you don’t understand.

‘Doing my job, as a nurse in intensive care, I have seen so many children suffering like Hannah. Of course, I want them to survive as long as possible, but I also understand that death can sometimes be a merciful relief.

‘No parent ever wants to imagine their child dying, but what parent wants to put their child through years more of painful operations that offer no guarantees?’

. . .

After the family complained to the General Medical Council, Herefordshire Primary Care Trust wrote a letter of apology to the family.

But her parents are furious that the hospital could believe they didn’t have Hannah’s best interests at heart.

Kirsty says: ‘I have nightmares about police breaking into my house and stealing Hannah from me. But that’s nothing compared to my other nightmare.

‘I am haunted by a vision of Hannah lying in a hospital bed dying and saying: “Mum, you made me have this operation. I’m not better and I’m going to die.”

‘If I thought having a heart transplant were in her best interests I would try and persuade her, but I would still have to go with what she decided.

‘She’s convinced she made the right decision and I agree. Who am I to make her go through another operation – and then still die?’

Sadly, however, death is something the Jones family have to confront on a daily basis.

‘I try not to think about death, but I do know my time is limited,’ says Hannah. ‘I live each day as it comes. I enjoy life. It’s hard not to feel that life’s unfair, but I am determined to make the best of it.’

Her attitude makes my moans about a house fire, and the disruption of repairs, seem rather feeble, doesn’t it?

God bless you, Hannah. I’ll hope and pray for a miracle: but if one doesn’t come, I think you’re pretty much of a miracle already. Thanks for showing us the meaning of courage.

Peter